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

Yes certainly children who have a global developmental delay are more likely to get picked up earlier for obvious reasons , but it doesn't follow that those who are developmentally delayed/ picked up early will go on to have high needs- there's just no way to tell (within the framework of current knowledge) which children will and which children won't, except to wait and see. some children simply "catch up" and others don't. One recent paper found that 37% of children with early diagnosis no longer have any clinically significant differences/ "symptoms" by the age of 7.

You seem to have some odd preconceptions about autism tbh. It is a very broad spectrum, and while some autistic people cannot make eye contact others can, and a lot mask by focusing on your nose or other part of your face to look like they can make eye contact.

Autists are also capable of being very loving. Love is shown in many ways.

@TakingItall

I have now read all your posts. I am giving this advice as a still undiagnosed mother (waiting list 6+ years here) of a diagnosed autistic (and ADHD & SPD) DC. I had to fight tooth and nail all the way because my child masks at school. If your school is telling you your child needs to be assessed, he really truly does. Teachers are not qualified to make a diagnosis, but they are well placed to flag children who would benefit from assessment. They do not start this process like handing out lollipops. You might be finding their views difficult to accept because you are used to your child, and can relate to him on a non-verbal level which allows deeper comminication between you. My child was not a late speaker, but I realised later on that I never felt unsure of what he wanted even before he could speak - I was just some how tuned into his frequency from very early on, and provided what he needed (sleep, comfort, food, interaction etc).

If there is autism/neuro developmental difference in your wider family too (it can be hereditary), it might just be that your view of what is developmentally appropriate is skewed. It is much much better for outcomes if children are helped early. If your child does not get the appropriate support, there is a risk that the gap between him and his peers just keeps on widening.

It sounds like a good idea to ask your SIL about the process she went through with your niece, but I would also strongly recommend that you ask the LA about support for parents of children with ALN. It might be helpful for you to have someone attend meetings with you (there are charities that do this work for the LA). I would also make sure that you are getting the appropriate support in meetings e.g. do you need information in written as well as spoken format? There are note taking apps that can be helpful (I cannot attend to the conversation and make notes at the same time, for example). This will help minimise the overwhelm felt at meetings, and you can read over the notes in peace and quiet. Also ask for meeting discussion points to be sent ahead by email in plenty of time for you to prepare.

It's a steep learning curve. Take all useful support that you can find. Good luck!

The (lack of) development and behaviour your son is showing would be extremely worrying for most parents. If your son isn't autistic you need to find out what is causing his lack of speech, engagement and such.

He is really not okay and he needs your help. With respect, do you have some kind of learning disability that's stopping you from fully grasping this situation?

Have you thought if you might be autistic too?

(And your dad and your daughter)

It runs in families. Your normal is not other people's normal.

(Autistic parent of two autistic kids, and my dad was very autistic in his behaviour and rigidity of thinking. It was only when my daughter was going through the process that it clicked)

Your understanding of autism is poor. That's not a criticism as you've probably had no reason to know about it until now. Worth doing thorough research and you'll soon learn that there every child with ASD is different. I've worked with many and it does sound like a possibility from what you've posted.

He's 4. Being non verbal at 4 is not young.

My 7.5 yr old is likely high functioning autistic loving, makes eye contact with trusted people, has friends. At 4 had no sense of danger, would run off, emotionally volatile. Fully verbal and fully toilet trained, no attention span for drawing or colouring, could multiply big numbers

My 4 yr old has no autistic traits. She talks to me conversationally in full sentences and has a sense of humour. She can walk down the road beside me and cross safely. She understands danger and how to avoid it. She doesn't run off wildly. She can sing, follow instructions, draw and explain her drawing.

What you describe of your son sounds like fairly profound autism

If he's not autistic what do you think is causing his frankly big delays?

Well we dont know that The Ops child is. Only four, my son was non verbal at four and remains non verbal at nearly 16 he is profoundly autistic.
However some children don't remain non verbal and can make quite significant progress
There are clearly delays but nobody can say at this stage weather he will be profoundly autistic.

I totally agree, my nephew was non verbal until almost 4, then suddenly could sing nursery rhymes and gradually speech came. Ops child is almost 5 and has only single words.

My nephew has autism and significant learning difficulties but is in mainstream school and has much less profound needs than ops child sound like.

My son is 7, likely high functioning autistic in that he has no learning disabilities but has sensory issues, rigid thinking and increasingly is behind socially. It's a spectrum as you obviously realise but op does sound solidly in denial

Exactly this

I think you missed the point of that pp's post. Just because a child has limited vocabulary at 4 doesn't mean they will go on to have profound needs / have profound autism.

My point is that at 3 that's very true, 4 less so. This child is almost 5. Do you know any children non verbal at 5 with global delays as opposed describes who went on to not have profound difficulties? I don't.

Yes the relative i spoke about earlier. Non verbal at 4,5. No delays at 7,5 . Perfectly average kid these days in mainstream

That's interesting. I've genuinely never seen that!

Well its true. Mind you you our family have always been late speakers anyway. My DD was 3,5 and had 6 words she could say. Got into grammar school at 11. With my 3rd i didn't even bother taking him to 2 year check as I knew they'd waffle on about his lack of speech. Another one with only half a dozen words by 3ish. Graduated from uni now

Apparently I said absolutely nothing until my mums friend bribed me with 10p to say sausages lol at 3ish

He sounds like he does have autism, what you have described is quite a bit more than just "delayed" you've described trouble with speech, social communication difficulties and sensory difficulties. I think you don't want to accept that, I understand I didn't want to at first but that didn't help my DD. Teachers wouldn't put him forward for assessment (to get accepted onto the asd pathway is incredibly difficult) unless they was pretty sure. He won't be diagnosed with autism unless he actually has autism. There's a lot of criterias he will have to meet to get a diagnosis. Accept the process OP you aren't doing your son any favours by sticking your head in the sand, been there done that worn the t-shirt and I wish I'd had someone to tell me straight back then.

Ok. So you do know autistic people can go to university etc right?

Well your experience is really limited in that case. it's not as unusual as you think.

I think it's the other way around, I see an awful lot of non verbal older autistic children in my line of work.

yes some children will remain non verbal. However, studies show that a significant number of nonverbal children develop language skills after age 4 and become fluent speakers.
Language development can occur later than previously thought, sometimes happening well into the school years or even adolescence.

Theres simply no way to know at this stage.

What is important for OP's child is he gets the support he needs now- regardless of diagnostic labels and catastrophising about the future.

I agree, my autistic child was almost non verbal at 5 but made significant progress after that. But he is still behind his peers and the gap has gotten wider with age, not just with speech, but with everything academically. Everything is impacted by his communication delays including friendships (he has none).

I would worry less about a potential diagnosis (especially as it sounds like an assessment is still years off) and focus completely on getting adequate support.

I know someone who was a very late talker, but he doesn't have autism or any other disorder. However, there are certain indicators that need further investigation, and that is one of them. You can't know unless you're qualified to carry out such an assessment.

If he has behavioural, developmental, or coping difficulties, they will be noted whether you get him the help he needs or not.

My DD was diagnosed very young - I think 5, maybe 6. School pushed for a diagnosis. Initially they said 'you might want to think about getting her assessed' But after one incident it changed to more 'you need to get her assessed'.

She presented entirely different to your DS. Not delayed, if anything, academically advanced (she is one of the youngest in the year too). My husband had a similar reaction to you - he didn't want her to be 'labelled'. Didn't want Autism to be used as an excuse for things. But really, I think we were both aware there was something. As a family we could constantly make adjustments to accommodate her needs. Eg avoid things we knew what would upset her; abandon plans last minute if we could see she was hyped up over something. Things its much harder for school to do.

I could write an essay (already have!). One thing I would say though, it doesn't get better as they get older. It gets more and more noticeable and challenging. And in fact the biggest struggle we have had has been the move to secondary school. And she wouldn't have survived it without the tremendous amounts of support from both schools.

Follow the advice. Go for the diagnosis. Get the support your son needs.

I didn't want to believe my son had "something wrong with him". I cried when he got his autism diagnosis. Because I knew at that moment that he would never "grow out of it" and "get better" - that this was him! That he had a life-long limiting disability.

BUT - now he got help and funding for extra help. Now his teachers (who often already suspected) knew that he wasn't "just being naughty". I knew I wasn't just a "bad parent" (I am too soft on him but that's another story) Scout leaders, dentists, youth club leaders can all be told he is autistic and have some clues to understanding his behaviour. It has been a positive step.

When he was first diagnosed, I refused to read the "autism information" that we were given as I just wanted to deal with my son as himself. As he's got older, learning more about autism has become useful as a guide to what might be happening inside his head.

A diagnosis is a turning point for you as well as him. But it will probably be a positive and beneficial step. Sending you both lots of love