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

[IsaTheIguana]

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.

I am the furthest thing away from right wing so that's quite funny 😁.

I appreciate what you're saying but when I see one of my children who is barely functioning have the same diagnosis as someone who can hold down a job and live a perfectly independent life, I wonder how they can have the same diagnosis as my child.

I appreciate it's a spectrum but having the same term for vastly different conditions is both confusing and insulting. Again my opinion and I don't wish to offend.

I just thought you should know you're saying the same things as The Telegraph! What their agenda is though, I'm not sure.

I think when you have a child with high support needs it would inevitably affect your view of the others.

My DC and DH can "pass" as "normal" but behind the scenes they have some major difficulties at times.

I noticed a lot of ASD traits, but always thought my daughter coped really well so didn't look at a diagnosis. I underestimated how good she was at masking. She then basically went in to meltdown and spiralled very quickly in 6th form and I found it very hard to get her any support due to lack of diagnosis. I wish I had done it before - A levels were really rough, for both her and me! We're now starting a diagnosis route, but she's off to uni next month. I very much regret not having done it when I first started noticing things.

I did exactly the same thing with my son. I refused the school trying to seek a diagnosis. He is quirky and interesting. He’s now 17 and is thriving. I felt if he was labelled he would always think something was wrong with him and it might hold him back. I made the right decision (and he agrees).

I have an autistic son who had a severe communication disorder but autism but the the criteria include impaired social communication.

Everyone copes well, until they don’t.

Would you decline any other health assessments for your DC or just ASD? 🙄

Not unreasonable at all. We are same - eldest son has the full alphabet of diagnoses and high support needs. Younger one probably has some diagnosable stuff going on but he is fine in school, popular etc.

In terms of ‘knowing yourself’ we talk openly about having a neuro-spicy family and that my undiagnosed son’s brain is a bit different from others but he doesn’t need a label.

If when he’s older he wants a diagnosis of course we’ll support that but as no need for intervention or funding i see no value in spending £££ on doctors to tell him what he already knows - his brain is a bit different and he needs some strategies for that.

But how would a diagnosis help the child? Support in school is linked to need, not diagnosis. So she won’t be getting support unless she’s not coping, which she is at present. In which case if that did happen the support still wouldn’t need a diagnosis, though a diagnosis can be helpful in unlocking funding.

Also very much not right wing here though i will respectfully disagree on whether it’s ‘easy’ to get a diagnosis.

My child has very pronounced needs so I know he wasn’t misdiagnosed but the private psych we paid for a diagnosis (got sick of nhs wait and ehcp pending) didn’t even look at him. He literally said ‘what diagnosis do you want’ and wrote the form. Boom.

I have a friend who paid three different psychs until she got one that would say she has adhd when the others said she didn’t.

If you have money it’s pretty easy to find an unethical doc who will part you with your cash and write whatever they think you want to hear on the paper.

One of my DCs has asthma. He still has asthma when the condition is stable and he doesn't require the inhalers and medication. It's still the same condition as someone who permanently has to use medications and is more limited in daily activity by the condition.

The differences of need in the autism spectum are very vast. I grew up with a non-verbal relative with severe learning difficulties that required special schools then full-time residential care in adulthood so I'm not unaware of what life is like with more severe additional needs in the family, but diagnosis is still important at the "high functioning" end of the spectrum. Society expects a near normal level of function from you, despite the lower capacity (add in the pressure of perfectionism traits). There are often differences in physical health. The difficulties are different but still real and life-impairing.

Understanding and diagnosis often help with finding better ways to cope with the demands of living in society. "High-functioning" people take very little away from those with more profound needs. They don't require the same services- access to a sensory room in a mainstream school and additional exam arrangements is taking nothing from a child in a specialist provision, and they're unlikely to make the thresholds for DLA or PIP.

The real problem is inadequate provision of services such as a greater range and distribution of special school places, respite care and external support such as occupational therapy, not other people with diagnosable traits that also meet the diagnostic criteria at a different level of need. Do I define my son by his maths and computer science ability or by the daily hours of shutdown and burnout as he recovers from a day of sensory assault in mainstream school.

The definition has broadened because it's difficult to pigeon-hole diagnosis into different niches. A diagnosis helps, but services tend to be need based so pedantry over the name of the diagnosis makes little practical difference on that level.

For us, diagnosis allows us to recognise and better adapt to difficulties. "Autistic" is better than "rude", "weird" or "lazy" which is how undiagnosed "high-functioning" people tend to be labelled when their differences aren't understood and they're floundering to meet society's expectations.

Needs being met is important for people to reach their potential and maximise quality of life, no matter their severity or the name of the condition, but recognised meeting of diagnistic thresholds does help.

We found a diagnosis opened doors at school that were closed to us prior to diagnosis. For instance a child that constantly disrupted my child which my child found overwhelming was put to the other side of the class from my child. When my child found certain situations overwhelming they got understanding rather than being told they’re naughty.

Eith such a long wait for diagnosis is get in the queue now.

Speaking as a Teacher….this! ☝️

The system is so slow that it won’t hurt to start the process now & have any diagnosis there as back up, should she need support in the future as she moves through her education. You don’t really have anything to lose.

Really good supportive thread. I would echo PP get the assessment and it will be there to support when you need it. Especially good to have in place through Secondary school which many people find stressful.

I have two ASD kids.

With DS (older) then he had more noticeable signs and was flagged up/diagnosed younger. He was coping well at the time, but later on the diagnosis proved absolutely invaluable in getting stuff in place so that he could continue to cope. He is at uni now and happy.

DD (younger) showed fewer noticeable signs and was flagged up/diagnosed later. She was basically disguising a lot of stuff and it put a massive strain on her. She appeared to be coping for way longer than she actually was. I think she has suffered a lot more than DS in terms of her mental health. The diagnosis has been very helpful, but I wish we'd noticed her issues earlier.

DS is more obviously autistic at first glance, but it's DD who I think has had a harder time of it and has more problems with anxiety and general unhappiness.

I suspect this pattern is not limited to our family.

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.

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?

I hope you reported them?

@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.

My autistic DD only started struggling in school at secondary

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.

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.

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.

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 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.

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.