AIBU not to pursue autism assessment for child coping well at school

You’re not the mum. The mother who is the OP says her child is not struggling. Who are you to say she is?

IEP is an individual education plan. Unlike an EHCP, it has no statutory force nor funding attached.

I didn’t say you weren’t in it, I’m saying that’s what some people are told re diagnosis and accessing support. I’m glad you haven’t found that to be the case.

and if people need interventions for social skills I’d say they are struggling? Is an IEP the same as an EHCP? I’m not familiar with that term just EHCP.

services tend to be need based

Some services may be need based but once young people reach adulthood any workplace or university adaptations or adjustments require a diagnosed disability. I've seen too many students who start university undiagnosed having been supported more or less successfully through school then crash and burn without it. It's often months before they realise and accept they need the diagnosis and then more months on waiting lists. The students with diagnoses can head straight to the disability service to get a learning plan and any other support before they even start, and while it's never easy it's much less hassle for them than starting from scratch.

In this instance but it might be different when she changes schools

That’s a really good point about the home environment. My DD is an only child, we have a pretty quiet, routine-led life (as that’s what I prefer), and if there are any changes to plans we tell her well in advice, so I suspect we have set up a ND-friendly home without thinking about it. I remember starting to read up about parenting advice for ND children and being quite baffled by the suggestion that they might need some quiet time after being out/ social interaction, because that was just so obvious to me. One of the hints that I might be classed as ND as well.

If she is 7, I would say go ahead and get the assessment.

The girls I know with autism all coped absolutely fine minus a few little quirks up until high school. That's when things fell apart quite dramatically for them. In fact for a couple they weren't even diagnosed until after this happened, and of course the waiting list is crazy long, damage was already done.

If you get a diagnosis it doesn't have to be a massive deal, surely? But having it in place ready for the upheaval of high school and puberty will be massively beneficial to you both.

There are way more other ways than school that autism can affect a child. Understanding when a kid doesn't understand that they need to eat, or that they can't tell when they're ill or why they need to rest after social interaction or indulge in their special interest straight after school or why notifying them of changes in routine is important, or why they need more help understanding their feelings or even just picking out their clothes.

'They're ok at school' doesn't mean 'they don't need any help'. And I would suspect that a child whose older sibling has autism is living in a home environment that already manages an awful lot of that for them.

Nope. Not my circus not my monkeys. We avoided the waiting list and got the EHCP sorted. It would be whack-a-mole. There are so many docs like this springing up all over the place.

We paid i think £3k for the diagnosis 6 years ago (basically a form and a 10 min phone call). More recently mates being quoted closer to £10k for private assessment. With numbers like this it’s no wonder it’s the wild west out there

Sorry love I am in the real world with 2 SEN kids so I do speak from a place of knowledge.

The OPs post says her daughter isn’t struggling. What help would you propose for a child who is basically absolutely fine other than the school who have already proposed an IEP to proactively help with her social skills? and a diagnosis isn’t needed for that.

This is a really interesting post.

Something I'm aware of is that autism in girls (and sometimes boys) is often diagnosed as a result of an eating disorder.

It's useful to be on high alert for that.

But the social help the school is already offering through an IEP per the OPs original post. A diagnosis isn’t needed for that

I’d definitely go ahead with it

My daughter was quirky (masking) at 7, starting to struggle at 11, at 15 she fell apart, took an overdose and ended up diagnosed with autism at 19.

Mine behaved perfectly at school so no one would listen to a word we said so if school have spotted something, I’d let them investigate

Definitely do it, my DD masked til she fell to bits at 13/14 …. She was rushed through the process thankfully but never went back into school so was tutored from home by school. She’s no at art college and has an EHCP, looking at online degrees now as a year at college 12 hours over 3 afternoons a week has broken her again

I actually really appreciate your response. Very eye opening and I'm more than happy to be educated on the subject. Wish you and your son well.

It prevents burnout and eases the pressure.

If you know that you can go to the sensory room to escape if needed, that's less pressure than if there is no escape and end up losing control or ending up in skiving the toilets and facing the discipline system.

Diagnosis helps his teachers read him. They understand that he's autistic and not being rude when he doesn't look at them, curls up on his chair (because standard sitting is uncomfortable for his hypermobile, dyspraxic limbs) or when he answers with a slightly "off" tone or word choice or has odd points of view that are logical to him that he struggles to articulate and explain.

He did social skills work in y7 when he didn't make friends after transition (did not transfer with friends) and met some other people on the same wavelength. He doesn't like the word "friends" but he finds them to be reasonable company and they also find the concept of meeting up outside school weird so there's no offence about 6 weeks of no contact each summer.

He can do his exams where there are fewer sensory distractions. His dyslexia and dyspraxia diagnoses allow him extra time to process language and express his ideas so he can demonstrate his knowlege in time.

We used to get regular meltdowns lasting up to 4 hours which was the crisis point that lead to assessment at age 7 (diagnosis at 9). With age he shuts down more. I've learned to pace him better; that the first two hours after school every day are a write-off. I don't fight his insomnia with arbitary bedtimes (although we could now do with a melotonin prescription that needs organising, but at least that is on his medical records)

The little bits of understanding at home and at school and adjustment to routines reduces the crisis points, and helps us manage them better when they do arise.

We're lucky that there have been few issues in school, but when they have arisen, pastoral conversations between home/ school/ him have de-escalated and not provoked his strong sense of justice that could antagonise issues. When he had a sibling dispute exacerbated by his autistic difficulties of struggling with change when his sibling moved into "his" school, treating it pastorally was far more effective than the standard behaviour system that would otherwise be used for that behaviour. He also can very rarely say "sorry"; that doesn't mean that he doesn't recognise that his behaviour hasn't met standards and a better approach would be to do x, but his feelings of justice about the trigger override being able to use that particular word. What he does say is sincere, and that's more important long term than parroting a specific word, but society likes "sorry".

He hasn't required many formal interventions but that doesn't mean that his needs aren't real and don't deserve formal recognition. When something more significant occurs, it can be responded to appropriately and faster and he isn't 1-4 years away from that recognition.

Diagnosis has enhanced his quality of life because he is understood better.

I had friends with similar profiles who went undiagnosed through their teenage years in the 90s, and that lack of self and societal understanding has caused more serious crisis points until late diagnosis in their 40s when their world finally made sense.

I agree with everyone else saying to progress the assessment, especially as school has suggested it. Your DD sounds very much like my DD at age 7, who also had a few quirks but was ok in school. She started to struggle more in Year 6, especially with anxiety, and is now in the early stage of the assessment process. I was already aware that she had some ND traits, plus DH and I have some ND traits, so it was not a surprise.

The main advantage of a diagnosis for me is so that DD can understand herself. She has already talked about feeling ‘weird’ and ‘not like everyone else’. A diagnosis would reassure her that there isn’t anything wrong with her, and that she might find some things overwhelming but can learn how to manage it. I’m aware that secondary school can be much more challenging, and a diagnosis could allow DD to access support if needed.

A lot of undiagnosed people with asd don't struggle until they hit puberty and even later. Early intervention is always better just to have a plan in place. I worked with a young man who was undiagnosed but coped really well until he went to university. He had a breakdown and had to drop out of his course. He's doing well now but it took him years to get back on track.

I think you wbu to turn the support down. If your dd has autism, she won't stop having it just because the diagnosis isn't pursued.

Too many people think an nd diagnosis is about managing behaviour that schools find inconvenient, so their isn't a need of your dd isn't being disruptive. But she's still (potentially) experiencing the distress living in a world that's poorly adapted for her and having to work harder than her peers to get by. I think she should access any support she can.

It helps in getting schools to recognise behaviour and need.

OP's school sounds supportive which is great, but the secondary school may not be.

When we have truanting issues in school, some are from undiagnosed needs and this is one of the first outward signs of the wheels falling off, and some are from chosen behaviours from students who don't care about lessons or want to hang out with friends or misbehave. Pastorally there isn't the capacity to assume that they're all undiagnosed needs until more evidence emerges, and that's unfair on the students with additional needs and limited school capacity to do so. Some students with needs do get swept along with the school's standard systems and get further harmed along the way. Then there's years of waiting lists. Even RTC is a year (and 200+ miles of travel... been there, done that...) while things are sill unravelling.

Someone I know ended up with the unfortunate timing of the school part of assessment coming up immediately after secondary transition (after much can-kicking by the useless primary school) and there just wasn't the knowledge and experience to give enough useful experience of his traits so that all fell through and put them back to the start again. Meanwhile he's still having difficulties.

It is better to go through the assessment process with a supportive school who see traits before a crisis point. In secondary, the coping threshold can crumble very quickly from the increased pressures and expectations.

If the school is suggesting it you would be stonewalling their efforts to do the best for her if you refuse. As others say the needs tend only to increase over time.

My autistic DD only started struggling in school at secondary

@MyKindHiker schools sometimes offer social help. For example my son did a term of classes designed to help a selected group of children talk about their emotions.

Outside of school help a diagnosis can be a way for children to understand why they feel the way they do. I spent a long time thinking there was something wrong with me.

I hope you reported them?

I appreciate your perspective. However if a person is high functioning and doesn't need many adjustments/ is able to function well in society and meet societal expectations ( I appreciate burn out is a real thing) then what does a diagnosis actually achieve apart from adding label to that person?