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

115 replies

IsaTheIguana · 17/08/2026 19:03

I have 2 DC, elder is diagnosed Autistic and has high support needs.

DC 2 is a girl, very bright academically, quirky, very noise sensitive and fussy with food / textures, I see her as a mini me but smarter and nicer than I was at her age. Has some friends but often plays alone. She is not being bullied and seems very typical to me in that she will play well with random kids at the beach or a playground.

School want to do an IEP to help her social skills. They clearly think she has ASD - my AIBU is - I have no current plans to pursue a diagnosis as I cannot see what benefit it would serve- but, am I BU? I just feel weird starting the process for a child who is not struggling.

OP posts:
Marie324 · 19/08/2026 11:06

BogRollBOGOF · 19/08/2026 10:56

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 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.

StormGazing · 19/08/2026 11:23

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

Springersrock · 19/08/2026 11:28

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

MyKindHiker · 19/08/2026 11:50

Catsandcwtches · 19/08/2026 09:57

@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.

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

Phineyj · 19/08/2026 11:50

Marie324 · 19/08/2026 11:06

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.

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.

MyKindHiker · 19/08/2026 11:53

peppy23 · 19/08/2026 09:56

In the real world it doesn’t work like that least not in my experience. We very much found there was more support post diagnosis. Before that it was very oh well we don’t know this or we don’t for sure….

One I’d the first posters nailed it, some teens especially girls do cope fine until they don’t (usually around KS4 as the poster said which times right with we found) and then by that point they are left on long wait lists with little to no support.

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.

MyKindHiker · 19/08/2026 11:57

peppy23 · 19/08/2026 09:56

I hope you reported 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

noblegiraffe · 19/08/2026 12:01

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.

CocoPlum · 19/08/2026 12:09

IsaTheIguana · 17/08/2026 20:17

Child is 7. I will 100% support the IEP process. I had an easy ride with child 1 he was diagnosed 18m after being put on pathway and and there was an ECHP in place before nursery age.

I dont want to let her down, I was diagnosed with a couple of mental illnesses in my late teens / 20s and always wondered if actually I have some ND.

Edited

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.

EllieQ · 19/08/2026 12:15

noblegiraffe · 19/08/2026 12:01

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.

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.

Catsandcwtches · 19/08/2026 12:21

MyKindHiker · 19/08/2026 11:50

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

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

AmaryllisNightAndDay · 19/08/2026 13:10

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.

peppy23 · 19/08/2026 13:23

MyKindHiker · 19/08/2026 11:53

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.

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.

Phineyj · 19/08/2026 13:29

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

MyKindHiker · 19/08/2026 13:30

peppy23 · 19/08/2026 13:23

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.

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

MyKindHiker · 19/08/2026 13:32

Catsandcwtches · 19/08/2026 12:21

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

Then they can get a diagnosis when/if they need it?

i speak from same position as OP with 2 kids, one diagnosed up the eyeballs the other one i know could qualify for a diagnosis (or candidly i could buy him one from an unethical doc) but i’m holding off whilst it’s unnecessary as he has good grades, is happy and has heaps of mates. So it just feels like there’s nothing to fix right now

Ponderingwindow · 19/08/2026 13:33

Get the diagnosis.

My daughter masked well and handled school just fine until the day she didn’t. It was like a switch flipped and indeed that is what happened. She was in an accident and the physical recovery was difficult. Months of managing that at school and home meant she couldn’t also manage to mask in the same way. Even after she recovered physically, the damage was done and she was a giant ball of stress every single day.

By the time we needed the assessment, it felt like everything was moving in slow motion. We had the money and savvy to navigate the system at maximum speed, but maximum speed is still glacially slow when your child is struggling.

If the school is willing, get everything set up now.

inthequietofdawn · 19/08/2026 13:33

Phineyj · 19/08/2026 08:19

I was also surprised by that figure.

My DC has an EHCP which nominally comes with £5k of funding, but it is hard to say what that actually goes on and parents aren't entitled to a breakdown.

You can ask for a costed provision map.

Some EHCPs come with a lot more funding than others.

MyKindHiker · 19/08/2026 13:34

Ponderingwindow · 19/08/2026 13:33

Get the diagnosis.

My daughter masked well and handled school just fine until the day she didn’t. It was like a switch flipped and indeed that is what happened. She was in an accident and the physical recovery was difficult. Months of managing that at school and home meant she couldn’t also manage to mask in the same way. Even after she recovered physically, the damage was done and she was a giant ball of stress every single day.

By the time we needed the assessment, it felt like everything was moving in slow motion. We had the money and savvy to navigate the system at maximum speed, but maximum speed is still glacially slow when your child is struggling.

If the school is willing, get everything set up now.

genuine question - if you had a diagnosis sooner what would that have changed? Ie: if she was masking and seemed fine, what intervention would you have put in place?

It feels without a crystal ball you couldn’t have known she was going to burn out? Or were there signs you missed?

inthequietofdawn · 19/08/2026 13:48

Just because a child seems fine doesn’t mean they actually are. Too often the signs are missed (not necessarily by parents but also schools/other professionals) or seen but not recognised for what they are.

MyKindHiker · 19/08/2026 13:59

inthequietofdawn · 19/08/2026 13:33

You can ask for a costed provision map.

Some EHCPs come with a lot more funding than others.

^^ this.

One son has an EHCP with c.£100k funding per year as he needs a special school and transport.

My other has an EHCP with £0 as it’s for dyslexia so it’s interventions which are free to provide (like extra time in tests)

StressedANmum · 19/08/2026 14:19

IsaTheIguana · 17/08/2026 20:17

Child is 7. I will 100% support the IEP process. I had an easy ride with child 1 he was diagnosed 18m after being put on pathway and and there was an ECHP in place before nursery age.

I dont want to let her down, I was diagnosed with a couple of mental illnesses in my late teens / 20s and always wondered if actually I have some ND.

Edited

Definitely do it. My DD was fine at that age, transition to secondary was a disaster and we've had mental health problems ever since. It takes soing to get support that if you wait until you need it, it will be too late.

Lohse · 19/08/2026 14:19

I was diagnosed as an adult. My mum saw my struggles and basically kept telling me I was fine, that I had to try harder, pull myself up by the bootstraps etc. I think she did this for good reason - she didn’t want me not to be able to cope with life. I love her dearly and understand her intentions.

However I suffered badly with depression and anxiety. I remember doing group therapy and thinking that none of these people seemed like me either. I felt fundamentally broken and hated myself even though on the outside I was very good at appearing happy, normal and even sort of confident. Things like standard CBT didn’t work at all and made me worse. Secondary school was genuinely traumatic for me.

As an adult I was (mis)diagnosed with borderline personality which is very common for autistic women.

It may be taking every ounce of your daughter’s energy for her to appear okay at school but she might not actually be. If you are going to make her aware of autism, let her know that people have mentioned she might have it, look at strategies to support her assuming she might at least have traits and make sure not to shame her then you are not necessarily BU. You can discuss it as she gets older and she can decide if a diagnosis would help her (most people I know have felt it was helpful so I think it’s a shame not to do it now when she’s younger but that’s just my opinion).

If you plan on dismissing her struggles because she’s able to function fine in certain situations, keep pushing her to “get better” etc even if it comes from a nice place (because we all want our children to function independently outside of us) then you are BU.

I can’t understand why you don’t want to though if it’s possible: If there were infinite resources I’d say why not just assess literally every child? If she’s not autistic then that’s the end of that. If she is, you might be saving her from a lot of self-esteem issues and a situation where she masks so much that by the time she is an adult she has no idea who she is or how to unmask.

I think you should explore your assumptions here - do you think that a diagnosis will give her “permission” to be less high functioning? Is it that you think it’ll hurt her to find out she is? That it will limit her?

Another thing worth mentioning is friendships. As an adult I’m in a lot of groups for autistic women and I’d say almost all of them find it very difficult to be friends with neurotypical people and only found real friends once they were in neurodiverse spaces.

One of the things you find with high functioning girls is they struggle with a lack of close friendships or they’ll move between friendship groups and are always on the periphery. They may manage romantic relationships better but may be taken advantage of a lot. (Some stats say 90% of autistic girls/women experience sexual assault or rape).

The friendship issue has persisted for me into adulthood and I’ve struggled with having friends even though I make the effort. I think that I’m being nice, making small talk, asking questions, not being too pushy etc but people do not like me or at least don’t like me enough to become close with.

I feel more accepted by autistic women but I don’t feel I fit in there either. I feel extremely uncomfortable when they’re unmasked and not following the social “rules” I so painstakingly tried to force myself to understand. I have very judgemental and even angry thoughts in a group where someone is talking too much about their special interest for example.

Not because I personally am bothered by it but because I’ve internalised the shame that it’s wrong. I’ve met others who have verbalised this same sentiment especially after experiencing a lot to shame growing up.

I end up feeling in the middle to two worlds. Not normal enough to be neurotypical but very uncomfortable around other autistic people. Like I know I’d be safe to be the real me but I almost physically cannot because I don’t know how.

I often wonder if I lived in the world as it is nowadays and had more access to being diagnosed as a high functioning girl, whether I’d have ended up a lot mentally healthier and I think I would have.

Besidemyselfwithworry · 19/08/2026 14:21

DedododoDedadada · 17/08/2026 19:06

I suppose the thing to consider is, although she is not struggling now, she may struggle along the line and a diagnosis may help her get the support more quickly when she does need it.

I agree with this there is no harm in going for the assessment. The waiting lists are massive too so if you bow out now you could wait ages if a problem occurs and you really need the support.

PurpleThistle7 · 19/08/2026 14:22

If you get her on a waitlist now she'll be in high school before you even get anywhere with it. Which may well be when things start falling apart a bit (that's what happened to us and I really regret not doing more earlier). 7 is still a baby, hormones and teenage years can be brutal for autistic girls.

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