Is it worth trying to get a diagnosis of a child seems to be coping day to day?

[OnlyBaBaBiss]

I’ve suspected for a long time (since he was around 3 or 4, hes now 9) that DS1 was on the spectrum and he certainly has sensory issues
I know a lot of people who work with people who have learning difficulties and special needs and lots of them have also made comments about him and agreed with things I’ve said

However - most parents of SN children have always basically said to me to let school notice it and diagnose and if school don’t notice then he’s clearly coping so just leave it as lots of their children became a bit of a self fulfilling prophecy after diagnosis and because more dependent after different strategies were put in place
And to be honest I’ve seen this happen with a close friends son, he declined massively in the space of a few short months almost immediately after he was diagnosed with autism and given support in school

Now school have given my son little things to help his fidgeting and focus in school but they’ve never mentioned anything about getting him assessed or him having any speacial needs of any kind, just that he’s a wriggler

Now DS has presented me with a bit of a dilemma - we went to the cinema last week, somewhere we’ve gone regularly since he was 5, and for the first time ever we had to leave after about 20 minutes as he couldn’t cope at all and ended up having a full blown panic attack
So this is now telling me that he’s perhaps getting worse and not coping as well as I thought?
This is the first time this has happened and obviously a cinema is sensory overload so it’s taken quite an extreme before he’s got to the stage where he couldn’t deal with it

If you were me would you maybe start the route of diagnosis? Is there even any help for sensory issues or is it just a case of avoiding situations that are uncomfortable?
How would I even go about it, school first or GP?

Sorry for how long this is

[jamoncrumpets]

Far far better to have him diagnosed and support in place, always.

[Sirzy]

Have you asked School if they have any concerns?

I don’t agree with your self fulfilling proficy concern personally and feel actually having a diagnosis can help provide understanding

[WeightedCompanionCube]

I'm in the same kind of position with my eldest who I've said all along I think will probably eventually end up with a well-socially-masked ASD diagnosis. At the moment I'm leaving it as a lot of the volatile behaviour has reduced drastically when we moved her school to one that's much more nurturing (she was at one of those academies where they had things regimented so much the kids had to walk down the corridors with their hands clasped behind their backs good job my dyspraxic DD2 didn't go there - she'd have fallen over her feet and smashed her face in about a week and really was in "sticking to the rules" complete overdrive) but it's something that I'm keeping a watchful eye on. At present I don't think we'd get a GP referral since the behaviour in school is gobby and a bit socially oblivious but that's about it - and our GPs don't listen to parental concerns unless backed up by the magical concern form from school. I've had a few fairly open and frank discussions with her class teacher and she's of a fairly similar view at the moment.

[WhoKnowsWhereTheW1neGoes]

At this age you need to start thinking ahead to secondary school. They might cope ok in their current primary school but secondary can be a whole different ball game, more people, crowded corridors, different classrooms and teachers for each subject, greater independence expected. Often undiagnosed children who have coped in primary find they can't in secondary, then it takes forever to get assessments done and support in place.

Also, typically a school will not start pushing for a diagnosis unless the needs are so extreme they really can't support a child - budgets for SN support are so tightly stretched now. Lettng the school notice it and go for diagnosis simply won't happen in the majority of cases.

I would start by making a list of all your concerns, any unusual aspects of pregnancy/birth/early childhood/family history. Ask for an appointment with your school SENCO to talk about your concerns, they may be seeing things you are not aware of and may agree to support getting a diagnosis, but its extremely unlikely without you pushing things along. You can also try your GP. Waiting lists are very long either way so definitely worth starting now in advance of choosing and starting secondary school.

[OnlyBaBaBiss]

Sirzy I haven’t outright no, but DS has mentioned that he has a few things in class to help him (he sits on a wobble cushion for example) he’s also had other things in other years but nothing set in stone

WhoKnows yes secondary school is a concern for me tbh, I think this is why it’s at the front of my mind atm
Secondary school can be overwhelming to say the least for anybody, but if he’s going to be struggling with the very basics of sounds and lights then I suspect he’ll go into total meltdown won’t he

I think I’ll ask to go in and speak to someone about him and see what they have noticed and go from there

Thankyou for opinions

[OnlyBaBaBiss]

Ok I’ve just rang school, it was the family liaison kind of person that I spoke to (she’s fab, I’ve spoke to her lots before about other things) so she went off and spoke to DSs teacher (who is also deputy head) rang me back 5 minutes later and offered to arrange an OT assessment for September
Just like that
They’ve been thinking this for a while haven’t they?

Argh I feel a bit wobbly now

[WhoKnowsWhereTheW1neGoes]

Oh my goodness, I'm not surprised you feel a bit wobbly. Well done for making that call!

Could I suggest you follow it up with an email "just to confirm that following our conversation on date, you agreed to request an OT assessment in September". It can be really important to keep a record in case they forget, budgets change, staff members leave. I would also take a little time this summer to pull together a file with school reports, any other relevant info as I mentioned earlier, any evidence of difficulties from pre-school/nursery etc that you may have kept. Also write down what you can rem,ember of the conversation today and keep it safe, together with records of any future discussions. The first part of any assessment is usually a questionnaire for the parents and school, possibly also a meeting with parents, and its good to have all the info to hand. It may also come in useful later as evidence if additional support is needed. Good luck and be kind to yourself, it is quite an emotional thing to put yourself through.

[headinhands]

Hi op.

From my experience kids with an asc that don't have learning difficulty may seem to cope quite well during their early years. Things tend to start to unravel about 8,9,10 when relationships become more complex and it's then that they, and others may notice their social difficulties.

A dx can help a child find an inner peace and self acceptance ,and an appreciation of their place in the world.

[Ellie56]

If school don't notice, he's clearly coping. Not necessarily.

Our son appeared to be coping on the surface, but in reality he was only just holding it together, and then when he got home, all hell broke loose.

Agree with other posters - get things in place before secondary, and also look carefully at all the schools out there. The wrong school can be a nightmare.