Had enough

[Holly221288]

Thanks in advance to anyone taking to read. I will try to not write an essay.

I have a 5 year old son (youngest sibling of 3 - my other two children are neurotypical). He is in full time school. We are under a paediatrician and he has recently had a brain MRI and some genetic blood testing. I think these have only been done to rule things out and she is leaning more towards ASD/ADD/Dyspraxia.

On first meeting you would probably think he is a NT little boy other than his significant speech delay and stammar. However he has some quite severe sensory issues (ie will only wear certain clothes, can't tolerate labels, light sensitivity, noise sensitivity), a very restricted diet, no social boundaries and very limited interest in others and he is never still.

Initially school seemed really supportive but I have just had a zoom parents evening and been left to feel I am imagining it all. They said he has some sensory issues and quirks but believe if he did get a diagnosis, it would be something very mild. They kept stating very mild repeatedly, as if they don't think it's worth pursuing. They also said they can understand while I might find his behaviour hard at home with being a single parent.

I am just over having to fight for every little thing for him because he is not 'severe' enough. Don't get me wrong I wouldn't want him to be any worse of course but I am not imagining it. His routines/obsessions/sensitivities have a significant impact on our life. And I am a working mum who runs a flipping tight ship, it is not like my children run rings around me.

Sorry for the mini rant, I just don't really have anyone to say all this to

Rant away.

I work in a school and i love schools on the whole and think they do amazing things but they can only say how a child presents with them. Which may be "mild" because children mask at school and lets be honest they cant give 30 children much individual attention to notice if they are quietly struggling in a way that doesnt impact the class.

They arent medically qualified or in a position to diagnose a child and a child at 5 might look mild in school but by 8 look very challenging ( looking at you son number 2)

You know how your child presents at home. Stay strong. It may well be a fight but my son is described as severe by school and its still a fight

Thank you so so much for replying. I needed to hear this. Thank you

@Holly221288 Trust your mummy gut instinct. School should be in no way commenting on potential diagnoses. It's really unhelpful and frankly unprofessional! 😊

My son sounded just like this at 5, I was worried sick. School did buggar all until I went to see a private paed (because we were on a 2 year + NHS waiting list) and he could immediately see it was dyspraxia with some sensory and speech issues. He diagnosed him. But I got nowhere with that school so I moved him in year 1 and it couldn’t have been more different, the new school were so up for doing salt and ot recommendations and they were so supportive of him (and me!). So in my limited experience some school/teachers get Sen and some don’t.

The first school had said things to other mums that their child’s bad behaviour was to do with them working too much - as if that can cause autism. It makes me angry to hear that people are still saying this crap to mums.

Anyway, my son is 9 now and he is soooo much better than he was when he was little - his speech, writing, sensory stuff, everything. but that is down to a lot of salt and a really great OT that specialised in sensory stuff. And a school that were up for doing it. Unfortunately we didn’t really get enough through the nhs so we had to go private. I hope the provision in your area is better than here.

It might be that he is masking at school, a lot of kids do or it might be that the expectation for a 5 year old is quite low. That changes as they get bigger

I have worked with autistic children in schools and this is so common. A lot of children manage to hold everything in at school and then 'let out' all their sensory/behaviour/communication issues at home.

If the school staff could diagnose ASD there wouldn't be such a long waiting list! We're not qualified to do it - simple as that.
It might be worth arranging a meeting with the SENCO where you go through the issues your son is dealing with and see if they can give any support.

I just wanted to say a huge thank you to everyone who took the time to reply. I was feeling pretty rubbish about it all and you all really helped. Thank you again xx

School staff have to divide their time between your child and 30 other kids in the class - there's no way they can know your child as well as you do. Trust your instinct. It may well be that your child is masking at school, or just that they are quiet and fly under the radar (especially if there are nosier kids or other kids with specific needs that get large amounts of teacher attention.)

You are your child's best advocate so don't give up fighting if you feel there are issues that are not being addressed. X

He's probably masking at school, or they're not equipped to pick things up, or both. "Mild" is not a helpful term, incidentally. If autism is serious enough to be diagnosed, it's not "mild". They probably don't know enough about the subject.

Don't question yourself or your instincts.

Could be he's masking at school, could be they're not paying enough attention or don't quite understand the sensory stuff (I'm an ex teacher and I'll admit I really really didn't "get" sensory behaviour fully until I had a squirmy, sensory-seeker myself).

I'm fighting it myself at the moment with a very anxious and I suspect autism DD who school just see as a "lovely kid, speech is still a bit off - what's she saying again and stop squirming" and I'm about to start working through the diagnosis maze to throw money at reports to get school to bloody well take it seriously as I'm sick of her coming home to find they've decided she "doesn't need that toy" again with things like fiddles and she's picked holes in her face instead. Long term the plan is to push for an EHCP - but short term the plan is that I no longer have any fear of being "that parent" and both me and the class teacher are counting down the weeks till we don't have to deal with each other again!