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

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 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.

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.

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.

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.

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.

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.

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.

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.

Everyone copes well, until they don’t.

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

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

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 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 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 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.

In my experience schools aren’t very interested in kids who are under the radar. If they think she needs some intervention I would take heed, as others have said she may need support down the line.

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.

Girls, especially intelligent ones, are masters of masking and hiding their struggles. My parents
also say I had no difficulties at school. I did. I was good at hiding them. I now have diagnosis of autism and ADHD.

I wish my parents had tried to get me a diagnosis or support. I was in the top class for everything at school, no problems academically, but I also tried to commit suicide several times as a teenager and had an eating problem. Studies have shown autistic people have an increased risk of suicide. Having a diagnosis can provide an explanation for feelings and a community to identify with.

You are entitled to your opinion, which aligns with that of much of the right wing media.

It's not easy to get a diagnosis.

Communication is more complex than "being able to speak".

I've taught autistic kids who were academically able and perfectly able to communicate, but who had no idea how to function socially in groups, which made their lives harder than necessary.

@pimplebum curious about the 10-20k help figure? My son struggles academically, is diagnosed autistic and certainly hasn’t been offered that kind of help

Cautionary tale:

DD2 struggled in primary but got through it. On the ASD waiting list from 9-11, then diagnosed. By year 10 she was completely out of school due to anxiety. She ended up in independent special schools and is just about to start college with 1:1 support at 19 on a level 1 course despite being bright.

DD3 coped well in primary school and seemed to thrive. She struggled a little with secondary school. Grade 8-9 student. By year 8 she wasn't eating or drinking at school, by year 9 she had tics and needed SEN support. By the beginning of year 10 she was out completely with severe OCD. Later diagnosed with ASD and ADHD. It took a year for her independent special school to get her into school, and she's now getting 2 GCSE results tomorrow. Next year she'll do another 3 GCSEs and then we'll think about starting college if her mental health is good enough.

If school are flagging it now, she's struggling.

Ok that's good for your child. My opinion though is it's being over-diagnosed at the moment. The definition of ASC is that its a communication disorder and a lot of people I know who have been diagnosed with it have no issues with communication. I have other children who probably would also fit the criteria for diagnosis (as it seems very easy to get a diagnosis now) but I don't see the point in labelling them with something when they are managing fine. Just my opinion which I am entitled to.

Wow!
Just because you have a child who you describe as severely autistic doesn't mean that those on a different part of the spectrum should be minimised. It isn't a race to the bottom.

Having had a diagnosis, I was very able to help mine through her suicidal thoughts, having accessed courses through ASD support providers.
Do not play down the benefits of knowing and being able to help a dc with ASD, rather than just thinking they are quirky whilst they battle their demons.

I wish I'd been diagnosed as a child. I think that it is easier for some girls at primary school age because they are able to learn to mask and mirror. I found secondary school brutal and I can't bring myself to think about how awful it was for my son. It would be good to know she has support in place. I don't think my son would have survived without the support from the senco and support staff.