To think DS doesn’t haveautism

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).

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.

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.

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

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.

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

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.

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.

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.

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.

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'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.

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?

Don’t worry, he won’t receive an autism diagnosis unless it’s clinically warranted. Despite what the media sometimes suggests, ASD diagnoses aren’t handed out lightly. The process is thorough and involves multiple professionals, using detailed developmental history, structured observations, and standardised tools. These assessments are interpreted within context by experienced clinicians, so a diagnosis is only made when there is clear, consistent evidence across settings. I'd suggest you might want to look into you also being assessed.

The inability to speak doesn't always hinder the ability to understand.

If your sons social deficits meet the triad of impairments then yes he is autistic.

It is a neurodevelopmental disorder that can cause delays. Many autistic children are gestalt language processors, not acquired language processors so the support for speech and language can change drastically from an autism diagnosis.

Hi OP, my 5 yr old DD has autism, she was pre verbal until just before her fourth birthday, alot of examples you have given are indications of ASD and not so much Global developmental delay.
No two kids with autism are the same, my girl is social , a real chatterbox and very sporty, she also has sensory issues around clothes, food , noise etc , her eye contact is great with some people not do great with others. Please allow your child to get the help he needs.

I have a DS with ASD and he is extremely affectionate and caring and can manage eye contact. People often have very stereotyped views of ASD (I used to have) but it can present in many varied ways.

Autism is massively over-diagnosed these days, but it really does sound like he has it, and has quite significant symptoms.

@TakingItallif you have any questions or need some help getting to grips with everything that’s going on, I recommend posting separately on the SEN parents board. I’m amazed your ds has had an EHCP put in place so soon after starting school, they’re notorious for taking ages and parents having to fight for one, being rejected and appealing etc. Why not ask your sil if she can attend a meeting with you and arrange to see the school SENCO and ds’s teacher, it sounds like communication isn’t great.

thank you

There are differing levels of autism and you don’t have to have all the things to be autistic. The fact he can’t talk at his age is concerning and all of the other things sound linked.

Child can be delayed overall may never catch up fully that is ok eg down syndrome or similar
May be very fine in a mld sen setting or supported in mainstream primary .

child may have speech disorder like apraxia very important to diagnose and specialist therapy Needs specialist slt setting

Child may have asd again very different approach and specialist support may be needed to understand and manage . May be best in asd unit

So the correct label is super important for your child to receive the right support now

No point waiting for a child with asd to follow a developmental pathway they never going to follow

A delay is vety different and is catch all and may be correct or not . Asd label opens other doors

Don’t fear the assessment and the potential diagnosis, OP. They are looking at what is different with your child and if they find him to be delayed, they will tell you as much. If they find there is another better name for how his brain behaves, they will tell you that. No matter what they tell you, it gives you and his school an understanding of what support is best for him and that is the win you need!

Do you know the expression ‘it takes a village to raise a child’? Right now you need your village because a child with a language delay needs to be exposed to appropriate rich language opportunities. That means human speech, not recorded speech, as much as possible. Once every six weeks is only enough to observe any steps backward - it’s not enough to make forward progress. If he can’t speak back to you, that doesn’t mean you speak with him less. If anything, you narrate to him as much as possible. He needs to hear and see people talking and there needs to be pauses that would allow him to respond as a more fluent child would, even though this will
just be silence right now. So time to get your village in line: make an appointment to speak with the class teacher and one with the senco. The SALT would be great too if possible. Get your head into the mindset of ‘how can I help my child improve his speech?’ so you’re out of the mindset of ‘what if my child has autism?’ Because one of those is far more practical and helpful than the other.

Once you have met with them to have their support of what can be done at home, then look at this side of your village. Who spends the most time with your child? If there are times when he has to sit without human interaction, who else can you speak so you can get more hands on deck? How often does anyone read picture books with him? How often does anyone narrate his activity to him, like now we are getting dressed. This is your shirt, these are the buttons. Let’s find your socks. You have two feet so you need two socks. One, two. Two socks! And so forth.

If it is just a speech delay and things have been physically checked that everything in his mouth works etc (remember older children can still have a tongue tie, not just babies!) then a real effort to surround him with enriched language opportunities for a good six months should give you and his teachers a sign of what progress can be made. It is worth the effort!

Above all, don’t use your energy for worry right now. Use it for practical ways to help your son develop key skills.

they do so because they know that the need for support will continue to grow

the thing is they don't know this at all though. Many children who have high needs at 4, will not continue to have clinically significant needs longer term.

I hear you on the waiting lists - that's what has motivated me to get on the assessment pathway even though I don't really agree with labelling my very young child (especially given stigma).
It's just such a shame there isn't a better system in place where children are given the support that they need for the present challenges - e.g. SALT for speech delay, OCT, etc. - without needing to slap a permanent diagnosis at a stage of development where this diagnosis can tell you so little about future development/ ongoing need...

OP, please don't be worried about your DS being put in an assessment process. He is obviously struggling at school, and an assessment will help the school (and you) identify ways to help him.

He may be autistic, or he may not. If he is, the diagnosis doesn't change him at all but it will help him get support. If he isn't autistic, the assessment process should still help to identify things to support him.

My DD was diagnosed at 15. Like a lot of girls, she was very good at masking and didn't start having problems till she was about 10 or 11. It took us all a bit of time to get our heads round things, but having autism flagged up as a possibility (and then a diagnosis a few years later) helped us deal with things better. She is still our lovely daughter, whatever diagnosis she has. We don't broadcast that she is autistic to all and sundry so she isn't 'labelled'.

You need to be your DS's advocate so please don't bury your head in the sand. Do some research, speak to your SEN contact at school and ask about anything in his Plan which you don't understand, then make sure that everything in the Plan happens! For example, is a SALT session every six weeks enough? Do you think his speech is improving? Does school think he is improving? Ask questions and make sure he is getting the help he needs even before the autism assessment happens.

Take all the help for your son that is offered, and ask for more if necessary.

You can do this!