Is going for an assessment now really the best thing rather than waiting for more data

[BirdsAndTheTrees]

So, I’ve named changed for this as people I know are on mumsnet.

A few people have said to us that our Y2 DS7 might have autism. They are friends and family but all but 1 have no training in the anything to do with children or MH at all. I have a family history of Autism and ADHD so I’m not stupid and know that this might be a possibility that our son might be ND. He is a little withdrawn, took slightly longer to talk and walk but still well within normal bounds, and is fine with his reading, writing and maths. He likes more breaks than a normal child and doesn’t have melt downs. He eats all food types and does the “t Rex arms” as one person put it (apparently this is a thing, the person who told me is autistic so I don’t want to dismiss this out of hand?). He has no filter and is articulate. (I’m trying not to use the word “but” as that implies some judgement rather than a collection of observations)

I realise that there may be traits, so I asked the teacher and the senco at the school and they said “maybe, but we wouldn’t even know what to put on a plan. So go for it if you want but what do actually want to to change”. And if fairness I think they have a point, there is no change in his academic support that I think is needed and currently he doesn’t like some of the boys in his class as they hit people but otherwise seems happy.

So a family member asked again if we had talked to the senco and we said we were told there is no point at this time but let’s check back in later. This person basically made me feel awful, like I wasn’t supporting my child and I was setting him up to fail in life.

The thing is, in the back of my mind there maybe something but I worry that the worse thing we can do is go for an assessment now him be too borderline and be sent on our way being told everything is fine and have to go through this process again when he’s older. I think repetitively trying for an assessment is more damaging than waiting. We are fortunate to have Autism diagnosis covered in our medical insurance for dependents. I checked the wait for private and it’s about 6 months here. Though there is only one shot at going private I think then we might have to go back to the nhs onto their long wait list.

I would like people’s thoughts on waiting to get more cases where my son is actually struggling before going for assessment rather than just going because some people see he has autistic traits.

We got my DS assessed last year when he was 7, in year 2.
Best thing I ever did.

You can go privately as many times as you want. I wouldn’t recommend going many times for many reasons! But honestly….people are telling you they are seeing things that concern them. Have it checked so it support is needed it’s given as early as possible. We didn’t and our child’s needs were not known or understood as I had waited….

Sorry roaringdragon, that was me saying about secondary. This is when the suggested adaptations fall under JCQ guidelines - so they didn't have enough evidence from half a term in primary (kinda fair enough) so they need to go back and "show" the evidence, when seems to be the difference made between not having and having (appreciate you can use a different colour pen for extra time which I'm trying to argue). But this is definitely reflected in the JCQ guidelines so I can't quite shoot them down for that. The changes my daughter had made were very late in Year 6.

Not providing support from the start of Y7 just because the support hasn’t been provided for very long in primary isn’t quite how the JCQ guidance works.

Exam access arrangements for GCSEs are governed by JCQ guidance and most secondary schools base EAA lower down the school on the same guidance in order to build a picture of need and show it is the candidate’s normal way of working as per JCQ’s guidance, but that doesn’t mean support can’t be provided from the off. In fact, JCQ’s guidance mentions examples of where DC have the arrangements during Y7 as their normal way of working. There are ways of building a picture of need and normal way of working without not providing the support.

I’m going to talk to the senco again. But it would be helpful those of you who are saying go for it to know which of the expressions I’ve mentioned it would be good to highlight?

When discussing needs without not providing the SENCO, I would focus on communication and interaction needs as I mentioned in a pp.

Ok but how do I break that down. For example I think he speaks clearly so to me if I say he is struggling with communication and they say “he speaks clearly and has a good grasp of language” I’m a little stumped as to what to say next.

This is not me trying to poke holes btw this is me trying to phrase my arguments carefully so o don’t get dismissed.

I would discuss DS’s communication and interaction skills. The SENCO should recognise this is about far more than the physical ability to speak, and if they don’t they are very poor, so they shouldn’t reply with “he speaks clearly and has a good grasp of language” but if they do, I would point out things like being withdrawn, having no filter, being blunt, needing more explanation than other DC and break-time.

Ok thanks!

For the record he doesn’t need more explanation. He bloody well gets it the first time 😂 he just wants to know the reason for everything and how every fits together. He wants more explanation. Like he fascinated by how the world works in intricate detail.

Anyway, I’ll take that onboard.

I think one can get the explanation first time but still need more explanation. The needing to know the finer details can be part of SEN for some DC rather than it just being a want.

I didn’t say it wasn’t I was just correcting your post as I didn’t want you to feel misled.

I think you're asking a very valid question - a lot of people have autism traits but not enough for a diagnosis.

In most private services, you can arrange a pre-assessment which can give you an indication if it's worth going ahead with a full one.

If there's no impact, school going ok, child is happy, I'd wait. There is no rush.

It feels as though you clearly don’t believe there’s anything to see as you’re very defensive to “correct” others? Someone with autism has said they are concerned. They are not a lay person for a start.
I think the best recommendation I have as a psychologist is to try to step back as if you’re going to come up with other rationales all the time it won’t help in assessment.

Ok thanks! Thats really useful to know!

Um. This is how everyone I know is? But perhaps that because I’m surrounded by engineers and scientists.

And I think he has autistic traits I’m just not sure I can convince a doctor based yet. It’s about me building a case for diagnosis. You guys are helping by discussing this with me. I’m sorry that you see this as combative, the text is not the best medium. I have been finding this very helpful.

I can only speak of my own experience but there are a LOT of forms to fill in before you get anywhere near the private paediatrician. And then the assessment takes quite a few hours and you're not with your child with all of it. They will have done a lot of assessments before most likely. I was surprised by how accurately they observed my child.

You don't need to do the clinical work yourself beforehand which seems to be what you're trying to do.

Later in, if you decide to seek an EHCP, you will find you're doing a lot of the admin due to the total crapness of most local authority SEN teams, so save your energy for that.

Check any assessment is done to the NICE guidelines.

When we finally saw the NHS paediatrician he was very complimentary about the private assessments we'd had.

I don’t believe my post needed correcting.

If someone thinks someone else wants more information to the point it is significant enough for them to a) raise it with you, and b) you post about it, it is far more likely to be need than want. That along with the other C&I needs mention lead to believe that it is a need in this case, not a want. Hence using need, not want.

You may disagree with that, but that isn’t the same as needing to be corrected.

you are right. I am trying to lay out the facts so they are indisputable or at least can’t be dismissed. It has been my experience that if you don’t they get dismissed by medical professionals. I think this is good to go in prepared and this is part of preparing.

However, I take your point about saving your energy.

It doesn’t need to indisputable. There are so many questions. It’s just your observations and views. But without the “but I’ve normalized this as….”….

There is much more to communication that clear speech. You need to think about receptive communication - does he show any problems processing what is said to him, following multi-step instructions, or general comprehension? Does he understand things like sarcasm and jokes; also metaphor - would he take something like "I must fly" literally and question why you say that when you don't have wings? In particular, think also about social communication: does he make and keep friends, is he rigid about rules etc, does he tend to bring all conversations round to his interests, can he repair a conversation that is going wrong?

One point to bear in mind is that, if your son may need an EHCP, it's to his advantage for you start the process ASAP with a view to having it in place before the proposed reforms come into effect. The government is saying that existing EHCPs will be retained, but it sounds as if your son will fall into the category that will have particular difficulty getting one under the current proposals.

He can follow multi step instructions like go get your bag, get your bike out of the garage and helmet. He get jokes and sometimes sarcasm but not constently.

He does get metaphor in the case you described, though I haven't thought about the many cases in which we use it so it doesn't come up much?

He does make friends and seems to keep them, though some have drifted apart due to different interests but that could be personality based. He's not into football and that's a big thing right now. Tbh this is the main one. The teache says he's made a new friend this year with another boy which is good but there are only 12 of them in the class so not really a lot of options to make friends.

He happy to listen to thinks that aren't his interests but doesn't take part in them.

I don't know what you mean exactly by repair conversations. But he realised if someone is upset most of the time but not always why which is the othe big one.

I'm waiting for an email with the senco to get the ball rolling.