Feel like I’m overplaying kids symptoms?

[Justpeachy88]

Hi all,

I have an 11 year old son and known that he was different since being young. Primary school put a referral in for me for an ADHD/ autism referral after me asking them to and pointing out the issues we have a lot home. He had a lot of school refusal last year and he struggles to concentrate, they weren’t entirely convinced about putting the referral in but did as he masks in school.

Since then, we’ve had lots of health issues, he’s had chronic constipation since being a toddler and was diagnosed with ARFID this year. It’s only the last few months that some of the peadiatricians we’ve seen have asked me whether I’ve considered wether he may have autism as they’ve obviously recognised certain things about him and it sounds awful but this made me feel relieved that it wasn’t just me imagining these things as even family members are not convinced, they think he’s doing alot of things because he’s misbehaving, such as tantrums etc.

He’s just started high school and I feel
lile things are escalating there, he’s always in trouble for not doing his work and fidgeting, not paying attention, being late to class etc. We’ve just had an EHA approved but got the confidence from somewhere after reading lots online to apply for an ECHP. So the council are currently looking into it and I’ve just had a meeting with school, they have limited information and have told me that it will more than likely be refused. Fair enough, I know they’re really hard to get. But she also told me she’d be surprised if he got a diagnosis of ASD/ADHD too as there’s nothing sufficient to show he has that. I was a bit taken aback and feel really silly and deflated. Has anyone ever got to the point of the tests and actually found out that in fact their child doesn’t have ASD? She hinted at behavioural problems as my partner does. Could it be that instead?

Sorry if this is hard to understand, starting to wonder if I’m looking for problems that aren’t there.

I'd suggest you carry on with the process but go into it with an open mind - he may or may not have ASD, that's what the assessment is for (but bear in mind that EHCPs are not dependent on having a diagnosis, they can be granted for specific difficulties with or without a diagnosis)

Having said that, you know your child best and your suspicions that he is 'different' and the fact that ASD has been suggested by professionals make it more likely that he does have it.

In my experience and that of many, many others, schools simply don't know enough to tell whether a child is autistic or not. Remember they are not medical professionals or phychologists. If your son masks as school, a secondary school will be hard pushed to work out what is wrong. They don't see what you see, and they don't see your son in the situations you see him.

As parents, we think schools are the experts but by the time they reach secondary, you realise they don't know much and that you are the expert.

Doubting yourself as a parent of a SEN kid is the name of the game, I'm afraid.
Try to put your doubts aside, carry on with the plan and see what comes of it.

It is a long, hard road. Good luck!

Behavioural problems aren't an explanation for anything, they are a symptom.

What an unhelpful comment from that staff member I don't understand where this drive to minimise concerns comes from. It is so incredibly confusing. I've lost count now of the amount of teachers, nursery staff and so on (don't get me started on MNers) who have said "Oh no, nothing like that!" or "It's normal!" like they think unless you're exactly like that one ADHD/autistic child they knew decades ago when only the most extreme cases were identified, it can't possibly be "that". As though it must be utterly shameful to be neurodivergent and why would anyone want to think they are. And for a really long time I set store by those responses because I assumed they would be more informed than me. But they were wrong.

I don't understand why, when prevalence is known, teachers and school staff and nursery staff aren't aware of roughly how many pupils with various SEND they should expect to see in a school or in a classroom. I find it baffling and frustrating that I am sitting in on my youngest's nursery settling in sessions watching staff members discuss over children's heads a child in the class who is having a really difficult time settling, with his distress particularly flaring up during transitions and times of sensory overload and they are confused by this and wondering out loud if he needs a hearing test and perhaps we should suggest it to mum. I mean I don't know this kid from Adam, maybe it's nothing in the region of autism but I would have thought some kind of ND or even just being a bit of a sensitive soul is more likely than a hearing problem.

Just absolutely amazes me how ignorant people are. Nobody is expecting anyone to be an expert but a little bit of knowledge goes a long way.