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 He is a little withdrawn, took slightly longer to talk and walk but still well within normal bounds, and is fine with his reading, writing and maths.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.

I’m not sure the things are too different - there are some things he does differently (as do we all) but they are requiring changes?
I’m a psychologist and mum of an ND DD with no family history. If several people are suggesting something is up - what are they seeing? I totally agree, no point jumping to assessment without the information; but school seems unhelpful (as mine were). Do you want to describe what they are seeing and any changes you and the school realistically put in place to scaffold them? You may not wish to of course so feel free to PM if I can help. But I wish I’d done something earlier.

Thanks for replying!

I have been told that he stands oddly (again the T rex arms), he takes a while to warm up to other children, he wants more explanation than other children, he’s less compliant than other children (he doesn’t hit or scream or run away he just says no thank you), his attention span is too long on tasks that most children seem to find boring (puzzles and Lego). He’s blunt and doesn’t understand that other children are sensitive (he made a boy cry last week by telling him that another girl was better at maths than him and that’s why she got to do the extension question for example). He practices his piano without being told and someone has labelled that hyper focus.

The only real thing objective data I had is that he didn’t walk until 15 months, or talk until 2 ish but went straight to sentences and he still sucks his thumb. There were no issues with toilet training him. He likes to spend breaks in the library.

I don’t know what I would want to change, the school are stretching him academically and encouraging him to play with others (his best friend he’s drifting away from as my child doesn’t want to play football ball at break time). We’ve been invited to lost of play dates and other children smile and wave at him when he gets dropped off. He’s happy right now, though he doesn’t hit by talk much about his feelings so it is a bit hard to tell.

I would request another meeting with the SENCO. I know you had one, but it doesn’t sound that productive. From your posts, it does sound like there are indicators that an assessment would be a good idea, but also importantly, it sounds like DS does need further support at school and the SENCO is wrong to say they don’t even know what support they would provide.

@roaringdragon Could you expand on what help would look like? I think this is why I’m not perusing this right now. I don’t know no what help options there are.

What further support do you think he’s needs from what I’ve written please?

Academics are only one aspect. From your post, DS needs support with communication and interaction. This is about far more than the physical ability to speak, and being articulate and bright doesn’t mean he doesn’t also need support with communication and interaction. This covers things like social interaction and social communication including presentations such as being withdrawn, having no filter, being blunt, etc. While I’m not saying DS doesn’t genuinely enjoy the library, spending every break in the library in Y2 can also be a sign DS struggles with break-time, be that because he struggles with the interaction or for other reasons such as the noise/busyness. So I would be looking at the school to support this. What schools offer varies but examples include things like Lego therapy, social skills interventions, supporting interaction on the playground, nurture group. Support in school is based on needs rather than diagnosis.

BTW, I don’t think most children would find puzzles and Lego boring. Some would, some wouldn’t. On its own, DC enjoying those wouldn’t be a concern to be.

If DS doesn’t talk about his feelings, that could well be within the normal range, but it could also be because he struggles to identify and communicate his feelings. I think it is worth you thinking about this point too. School can support with emotional literacy if this is beyond the normal range.

Ok that makes sense but I guess that backs up the point that I was trying to make that it’s not time for an assessment? If he can access this help without that why should I be pushing for a referral?

While (the vast majority of) support is based on needs, not diagnosis, a diagnosis, where there is one to be made, is still important, IMO, and I still think there are indicators from your posts that an assessment would be a good idea.

But again you haven’t addressed why now? I feel this is happening a lot right now where people are acting like I am saying no to an assessment ever. I’m not!

I am asking what the pros and cons of going for an assessment now versus in two years, four years what ever.

Right now, I would fill in form and I am worried that we will be turned down because they will see a quiet well behaved shy child who isn’t struggling outside the norm coming from an affluent family with weak evidence. On top of that you have told me support is based on need not diagnosis and if this is an avenue of something can help he that he can access immediately and does help him and crucially would add more evidence to a diagnostic assessment.

The worst thing for my son is to not play the bureaucratic game correctly and screw it up for him, such he cannot access the care he needs as we moved too soon and then for the second time round I would need for his life to fall apart before he got seen. I’ve read of loads of people on hear talking about “the fight” they have to get their child taken seriously and as we have the luxury of a private diagnostic route I’m loathed to go down that route while he is a) happy and b) the evidence can be written off as within normal bounds.

If you think there is a strong level of evidence then that great, and you are saying that you think he would clear that hurdle?

I have not suggested you are “saying no to an assessment ever.”

You asked for opinions on seeking an assessment now vs waiting. I have said I would seek an assessment. If you disagree, that’s fine, but I was just replying to your OP.

Why now? Because I think there are enough indicators to suggest an assessment is a good idea. If I think a diagnostic assessment for one of my DC is a good idea I don’t say not now, maybe later, just because school support is based on needs not diagnosis. It is a medical diagnosis. People don’t say don’t get a diagnosis because support is given anyway for physical health needs, neurodevelopmental conditions shouldn’t be any different, IMO. You are, of course, free to disagree.

I had my daughter assessed at age 7 after about 3 or 4 years of noticing differences from her peers.

I would caution that the older you leave assessment, the more likely it is the child may not comply.

The transition to secondary is the part that is often most tricky and if you have a SEN child you need to be thinking about that much sooner than the average parent due to the time it can take to secure an EHCP and then a suitable placement.

I don't think anyone really believes that it's common that needs are met if there's no diagnosis of anything. A lot of schools will magically not "see" needs!

I'd wait towards the mid to end of primary - Y5? - see how things are then and assess if he struggles to support transition to secondary, especially since you can access it privately. It also gives school more time to get to know him better, and gives you time to get more evidence, think about it, discuss it with your child. If he is supported, happy and settled, there's no need to rush into anything, despite family member's repetitive questioning.

Forgive me, but I wonder if under this lies fear? You seem to rationalise all the things others have picked up, but I promise you it’s very rare it’s the way round that people think there’s something that needs more exploration and understanding and they’re wrong.
whilst diagnosis doesn’t mean more support on paper, in practice it does. My child now has an IEP which I added to (it wasn’t welcomed lol). But because any suggested changes weren’t carried out for long enough in primary school, she can’t have these at secondary without them not providing them to see the outcome first. Not ideal in an already tough transition year.
My DD has inattentive adhd - I wondered if they’d just say no but on the relatively new online test (which I thought she’d ACE) she got in the top severe section - it was as I thought, she was fighting to look like she had it together but wasn’t focusing and kept being told she was slow. We had an Ed Psych report which was also so helpful and showed she was academically in the top 5% but couldn’t make this work on paper.
But, we did this too late in my opinion.
so, as the other poster said, the earlier anything is picked up the better. And you can go back again in a few years for a review.
I tried to make things seem like “normal” behaviour (and my child is very well behaved; bit people pleaser and I put it down to anxiety) but there was a lot more.
A friend also waited when people said get an assessment. Her child has since been excluded a few years’ later and because he doesn’t have a diagnosis it’s been much harder to manage the system.
I don’t think there’s harm in doing it, but are you fearful of a diagnosis (which would be totally normal)?

That will be too late unless she wants to do secondary transition with no EHCP.

I applied for EHCP in October of year 5. It was issued in June of year 6. Tribunal waits are even longer now.

I had a friend who’s child was assessed early and rejected as his need was not great at the time and that meant the had to go back in the waitlist for 4 years. In the middle of that they got turned down again as he had already been assessed.

So yeah, there’s a lot of fear of going to early!

And by need, I mistyped and meant his expression of his autism. His symptoms were small. I’m sorry I can’t think of the correct phrasing this morning, but I’m going to trust that you get what I’m saying.

But you're going privately.....honestly, if you have this many people saying to you why are you not going for assessment, I think you need to take a step back and think about what they're seeing......
I think plenty of people have said there are reasons to do it now (strong ones) but you don't seem to want that answer. Which I get as I was kinda similar too.

But I can only go private once? So if this doesn’t work out I have to put my son on the waitlist so I don’t think the fear is unreasonable if it doesn’t work this time?

What do you mean by "work" though? If your son's got a certain neutotype or particular attributes or challenges, he'll still be the same boy in a few years' time?

Because I can’t write down the evidence to support a doctor diagnosing him. Because I don’t see the proverbial “smoking gun” and I’m not confident my son would reach the threshold.

I cannot go to a doctors and say “a bunch of lay people have said that they think my kid has mild autism so can you assess him”. That’s going to be laughed out of the office and then we will be at the mercy of the NHS waitlists if things got worse. That my biggest fear!

I’ve had one person say here that the evidence I’ve presented is enough, one person who said they don’t think it is and another say trust the lay people. It’s not a sure fire thing or even close to it. And the way I see it there are three rough scenarios:

1. We go for a diagnosis now. He is diagnosed. He gets support, he’s happy

2. We go for a diagnosis now, he’s not diagnosed. Things get worse, he becomes unhappy and we have to wait years for help.

3. We don’t go for a diagnosis now but perhaps we do in a year or so when we’ve had time to collect more evidence so I am more confident that he will be diagnosed. He’s currently happy but this does rely on things not changing in the mean time.

I get it, option one would be great but I’m actually worried I’m picking between option 2 and 3. And I think people are telling pick option one, but can’t trust that option one will happen and the down side of option 2 is really scary.

Why can you only go private once? I understand the medical insurance may only cover one assessment but that doesn’t mean you can’t fund a private assessment outwith that. I understand not everyone can afford to pay for a private assessment, but I wouldn’t have thought that would apply to someone who describes themselves as an affluent family. You may not want to fund an assessment, but that isn’t the same as not being able to.

because any suggested changes weren’t carried out for long enough in primary school, she can’t have these at secondary without them not providing them to see the outcome first.

Whoever told you that misled you.Whoever told you that misled you.

Wouldn’t we be dismissed out of hand for trying again as we were seen to be shopping for a diagnosis?

I guess we could pay for it, I didn’t think it was an option to try again privately, though I’m not sure why I thought that

No. HCPs shouldn’t just dismiss it out of hand because you had a previous private diagnosis. The term ‘shopping for a diagnosis’ isn’t the same as seeking a second opinion or seeking an assessment a couple of years later if things change.

Right, ok, maybe this is also one of the things I’m worried about but didn’t realise I had thought. The idea that there was only one chance private then one chance NHS so I better not fuck it up.

Sorry, my pp should have said ‘previous private assessment’ rather than “previous private diagnosis’.

OK, so I have been aware my child is different to the norm for around 8 years now and my knowledge has increased. To begin with I didn't even know what I was asking for. I didn't know much about autism or ADHD (it came as quite a surprise to be told she met the threshold for ASD because the ADHD issues were much more prominent at 5 or 6]. I didn't know what an educational psychologist was nor why an academically able child might need to see a speech and language therapist. I didn't know what ELSA stood for.

I'm a qualified teacher by the way! But most of my experience is in selective school sixth forms so wasn't very helpful. I was espec

Your knowledge will evolve over time and there's very rarely one chance for anything, so try not to panic.