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

How is it massively over diagnosed? I am genuinely curious why some people believe that.

Speaking as someone who knows significant numbers of children with the condition as my son is in an autism group I’m genuinely curious how anyone could think it was over diagnosed.

There is not one of these children that anyone wouldn’t believe is autistic without even having any experience with a ADOS process. NT kids know immediately on meeting them that they are “different”.

Have you come across multiple children who are diagnosed that you think have a fake diagnosis?

I'm pretty sure he is autistic from what you've said about him. If a child takes that long to start speaking then something is wrong. They won't just be "delayed" for no reason. All of the other signs point to autism too.

But I feel like this thread is just a wind up designed to get people worked up.

In the short term chat to your sister and maybe your Mum if you've a close relationship with her, if your partner is never there, I think you need someone to help you process the idea the he could be autistic. Someone suggested meeting with school, could you take your sister with you? You need someone who actually absorb what is being said and talk you through it afterwards, as not sure you can handle that on your own at the moment. From everything you type it sounds like your child is neurodiverse and you just need some help adjusting to that possibility before you can really help him.

I agree it's not overdiagnosed these days, rather it used to be massively underdiagnosed. Nearly everyone on my dad's side of the family including my dad would fit the criteria for autism, of varying "functioning" levels. The only ones that have been diagnosed are 2 of my cousins as both are non-verbal and have other signs of severity such as still being in nappies into adulthood.

My uncle didn't start speaking until he was 6 and even nowadays he hardly speaks. Same with my cousin. In the family both of them are referred to as just being "shy".

My dad doesn't get social cues at all, is very emotionally immature despite being in his 70s, is obsessed with comics and used to collect them to the point where there was no room in the house and some ended up in my bedroom as a teenager despite my protestations. Any minor deviation from his routine will also result in a meltdown.

None of those family members of mine would believe or accept they have autism though.

My mum tells me when she was a kid it was quite normal for someone to say about a neighbour for example "oh that's just Jimmy don't mind him he doesn't speak and will just stare out of the window at birds all day and occasionally make funny noises but he is harmless."
There was no awareness of people like that being diagnosed with anything though or being thought of as autistic.

Being non verbal until 4 and a half is a huge cause for concern and not something a child is likely to recover from by themselves. Most toddlers are having full blown conversations with the primary caregivers at 2. You should keep investigating the reasons until you find a cause, autism or otherwise.

It is true that children develop at different rates and can be delayed versus average on various skills - but this is way way way past the range of normal. I’m shocked your local authority hasn’t pushed for other interventions before this assessment.

I have a very similar child who is autistic. No one is “aiming” an autism diagnosis at your son. They have observed a number of behaviours that are in line with autism and it sounds like you are years off an assessment anyway. A diagnosis or “label” won’t hurt him - it will give him the support he needs.

My child has similar speech delays, 2-3 word sentences until his language started to blossom around 5y and is now very chatty. But he speaks very differently to other kids, his sensory issues make it difficult for him in a mainstream classroom, and as a result he is years behind his peers academically even though he is very bright. He wasn’t making any friends. When he got to Y4 he got into a specialist school that is a good fit for him but I don’t know if he’ll ever be able to fulfil his potential.

I would take as much help as you can get and as early as you can get it. Find some SEN parent groups for support. Waiting or pushing back against “labels” won’t help him.

Time for a comic interlude brought to you by the Daily Tism....

Have they mentioned Global development delay,?
Quite often they can be comorbidities ?
It sounds like something is going on
I get it i didn't want to acknowledge there were any concerns when my son was very young too ,but he was diagnosed with autism and learning disabilities at three
It is something you learn to accept.
What helped me was meeting people whose children had similar needs.

It's a diagnosis not a label and he won't be diagnosed if he isn't autistic.

they don’t have the budget to be over reacting.
Believe us lot on the other side when we tell you schools don’t recommend assessment and intervention unless it’s really needed. It may well take years to get a diagnosis but there is funding the school can access now. You can speed this up if you get on board and ask how you can help. It’s always quicker if the parents can be involved as the school can’t put the time in to chasing things up, keeping tabs on whether things have been done that should be done etc that you can as a parent.
i would suggest they are going the diagnosis route as it’s very likely he won’t be able to enter a mainstream secondary and will need either an SEN school or a unit attached to one.

i do empathise with not really seeing the issue etc. I didn’t see it with my son. Luckily he has an autistic uncle so that side of the family convinced me not to hang about as if you don’t have something sorted by secondary they can end up out of school completely.

You need to be proactive. Although it sounds like you haven’t really come to terms with an ASD diagnosis and that’s understandable but you still need to advocate for him. It is called a spectrum disorder for a reason so there are no hard and fast rules re presentation,

In saying that, the school seems to be quite proactive but you need to be too. Arrange a meeting with his teacher/s, arrange for private SLT as a matter of priority and give him all the support he needs.

My son wasn’t making any progress at his reception class. All the effort was focused on keeping him in the room - he would remove himself to the quietest place he could and refuse to come out till it was time to go home. At 4 he moved to a special school which 6 children, a teacher and two LSA’s (one of the kids needed 1-2-1). He started to make progress immediately, as much as anything else, I suspect, because his anxiety reduced enough for him to climb down from fight or flight mode and be aware of his surroundings. He would have benefitted from small groups and understanding from 18 months old (which I when I felt he needed more than I could give him at home).

i'm 18 and autistic and your son sounds exactly like how i was at his age!! i really struggle with food, and was late to talk, but i can do eye contact and id say im pretty loving to people i'm close with! don't worry about the diagnosis, it isn't a "label," its just something that will help people understand him, and help them accommodate to what he needs. i was diagnosed at 13 and the diagnosis was a game changer; people and school stopped ignoring that i was struggling because they now had a duty to make sure they supported me. i found it very helpful. i understand this may be difficult for you to come to terms with but it really is a good thing that if he is autistic, he gets a diagnosis, so he can get the support he needs from school and eventually employers.

if he is being assessed, then, as PP said, there is definitely evidence that he's showing signs of being autistic. its no bad thing to get him diagnosed now, because all it means is he will be able to access support earlier rather than later! sending my best wishes OP and i hope your son gets the support he needs :)

OP it is rare for child to be awarded an EHCP before starting school driven by the nursery setting with passive parental involvement. It is concerning that you report being overwhelmed and zoning out in meetings. You need to be involved and SENDIASS can support you if needed.

‘They’ are not overreacting - you are under reacting. You need support so that you can support your son.

I think it's inevitably over diagnosed as it's pretty much the only available diagnostic label for a child age 4 to account for a wide variety of different presentations of neurodevelopmental difference that don't have a specific identifiable medical (e.g. genetic) explanation. The fact is that humans are neurodevelopmentally very diverse, meanwhile the assessment criteria - e.g. specific ASQ questions are remarkably specific and standardised.

It sounds as though there is definitely something going on. I would want to explore it more with a medical professional

Who is organising the assessment?
I have got a bit confused with where the potential diagnosis has come from, it sounds like he went to nursery and they have raised concerns. I would trust their judgement and if they think he needs assessing and an EHCP then you need to go with that. Most parents have to fight to get this. It will enable your son to get support, depending on his EHCP requirement this could be a 1:1 TA which you do not want to miss out on by blocking any early intervention now as you don't want him labelled, meaning that the process is delayed and then he goes without support for all of KS1.

I don't understand why if he has an EHCP in place you haven't already met with the class teacher and sendco. In my school any IEPs were done in the first few weeks and we have even had a parents evening for everyone.
Check you haven't missed anything as this seems unusual for the lack of contact.

OP - when was the EHCP issued? By law, an EHCP has to be reviewed every year. This process includes a formal meeting with parents/carers, the school/nursery SENCO, plus professionals who work with the DC. Has this ever happened?
When a DC with an EHCP changes setting - eg from nursery to primary school, there should have been several transition meetings with the new teacher, SENCO etc. Did this happen?

It may be that the EHCP is very new, in which case, do make sure you know the law around what's meant to happen when. There's some good info here:

https://www.ipsea.org.uk/pages/category/education-health-and-care-plans

That aside, in terms of getting your DS assessed, firstly, as you say the wait times are very long. Why not get him on the waiting list and see what happens? By aged 7, things may be a lot clearer.

I'm sure all this has come as a shock to you and it's a lot to process. My DS has autism and it look a long time for me to come to terms with it. Your lovely DS is still the same person with or without an official diagnosis. My DS tells me that he's grateful for knowing why he struggles with some things. It's not a perfect comparison but someone with diabetes still has that condition with or without a 'label' and knowing that they have a condition means they can get the support they need.

I would also say that most DC with autism do develop and learn new skills - just like all children - but it can take them longer to do so. Many have what's called a 'spikey profile' - so for example my DS is very knowledgeable about his specialist interests but can't tell the time or tie his shoelaces at 15.

As others have said, the priority is to ensure that your DS getting the help and support he needs to thrive now, regardless of a diagnosis. I would make an appointment to speak to his teacher and the Senco. You need to go through his EHCP line by line to make sure it's fit for purpose (any wording like 'would benefit from' is meaningless) - and then to ensure he's getting it. I would say that given his speech delay, you need to really look at what provision is in his EHCP to help with that. (My DS has daily speech and language therapy written into his EHCP for example.)

How old is he? I have a relative that was completely non verbal at 4.5. At 7 jaws the hind legs off a donkey

Just from my own personal experience, the children that get diagnosed younger tend to have a global development delay where as older children / adults don't so it's not picked up on sooner

I have 2 friends with autistic children who are both severely delayed / none verbal. One is 10 and was diagnosed when he was 3. The other is 4 and he has an appointment next week

Just my own opinion/experience it's fairly obvious with some globally delayed autistic children what their needs will be when their older. It was very clear that my friends then 3 year old was going to need lots of support as he was growing up

@TakingItall are you feeling any different about the process after reading the replies? It is a lot to take in.

You keep saying it might just be because he's like you, but have you considered that you could be autistic too?
Schools have a lot of expertise in this area. They're trying to help him, not label him. Get him assessed and go from there.

Quite often those children who are diagnosed at a young age tend to have more significant needs ( not always of course).

You have just described my son who is autistic, and the early intervention has been invaluable. I understand you may be finding the label hard to accept but it really makes no difference as he will still be your darling boy.