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Is anyone the parent of a child with asd and not seeking a diagnosis?

664 replies

coodawoodashooda · 01/10/2022 13:37

Not looking for a bun fight. Just trying to sort out my thinking. Anyone with any of their own insight that they'd be willing to share?

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Techno56 · 01/10/2022 13:39

My son is autistic.

The diagnosis opens doors to support that isn't available without it, so I would personally do the same again.

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Mummadeze · 01/10/2022 13:40

Not sure how you know for sure they are autistic without a diagnosis? I have recently got my DD 13 diagnosed and it was a relief as now hoping to access more support re her education. School is such a challenge for her.

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eyeteevee · 01/10/2022 13:40

Please don't do that to your child.

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SpinningFloppa · 01/10/2022 13:41

Yes me.

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SpinningFloppa · 01/10/2022 13:42

My sister has also declined getting her son assessed though he’s an adult now but wasn’t at the time it was suggested.

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WillPowerLite · 01/10/2022 13:43

A diagnosis will prove hugely valuable to him. From in-school support to extra time in exams to support at uni or in jobs.

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Pengwinn · 01/10/2022 13:44

My parents didn't push for a diagnosis for my brother. The result was fucking up his education as he couldnt access support he should have been entitled to, he spent many years in turmoil trying to understand why he was different to his peers which led to a lot of issues, amongst other things. Getting a diagnosis as an adult is incredibly challenging and in my opinion too late in many ways in terms of ensuring you have the support you need going through school and those formative years. I'd ask someone considering this why- having a diagnosis or not won't change the child just that one hinders and one enhances their chances.

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SpudleyLass · 01/10/2022 13:45

Not exactly what you're asking for, but I'll give my perspective.

My 4 year old daughter is autistic, Level 3 so very significant needs.On that basis alone, I feel if you strongly suspect your child is also ASD, a diagnosis would be a good idea in order to gain support for them. In my case, I knew there was something ''off'' about my child from 18 months old but have only just this past July received the diagnosis. I'm still grateful to have had it before she started school though, as I understand it is much harder to do so after this period.

I have long since suspected that I am myself ASD. I really struggled with socialising, at school or anywhere growing up. I was incredibly sensitive, never knew what to say nor could I grasp nuances of a social life. At 30, I still don't really get much of it.

Having said that, I'm not seeking a diagnosis for myself at this point as I don't feel I personally need it. But with the benefit of hindsight, I would say that I wish I could have been diagnosed as a child. I do think I would have had an easier time of it.

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eyeteevee · 01/10/2022 13:46

It's an utter disgrace that refusing a medical assessment is even an option.

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WillPowerLite · 01/10/2022 13:47

But I'm a teacher and I meet lots of parents who choose not to have their dc assessed. In fact, in most families I've dealt with where the school recommends assessment, at least one parent is very against it.

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Thatboymum · 01/10/2022 13:49

I have one with diagnosed adhd who is medicated and I actively sought that support but also have another who school referred to camhs as they believed he was autistic and camhs after 2 appts confirmed they agreed but couldn’t diagnose and asked me if I wanted him referred further and explained it’s a huge wait list and I said no . My reasons for that is because he’s high functioning and extremely mild, has amazing school support and I don’t feel he needs additional input or a label as for him it would change nothing However his younger brother desperately needed support and input so I got it

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amylou8 · 01/10/2022 13:52

My son was diagnosed with Aspergers at 11. He definitely needed the support that came with it. My nephew undoubtedly has Asperger's but has managed in mainstream school and now at uni without a diagnosis. What I would say is my son really struggled leading up to his diagnosis, he was out of school for almost 2 years. Had we sought the diagnosis early then quite possibly he would have got more support sooner.

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SteveHarringtonsChestHair · 01/10/2022 13:54

My DS is undoubtedly on the spectrum, as is his dad.
He’s an adult now, but I have suspected ASD since he was about 12. He’s very high functioning and similar to his dad so we always just thought that was his personality tbh. Friends who have children with diagnoses of varying types/degrees agree that they share many traits and have asked why I don’t push for a diagnosis.

We talked to DS (and his dad) about trying to get an official diagnosis but they both decided that it wouldn’t necessarily benefit them to know. DS was labelled as gifted and talented at school, was far ahead of his peers at primary and had a small group of good friends. By secondary he had levelled out academically and while he struggled with some of the rules and social etiquette of school, he didn’t strike us as any more troubled than a lot of teens.

XH was 40+ by the time it was even suggested to him so again, he couldn’t see the point in a diagnosis for either of them, as he’d done ok for himself. DS especially felt that it was “pathologising his personality” and that he didn’t want to be labelled in some way ‘different’.

Both of them have very responsible jobs (think military type roles) which require regular medical checks and certificates and XH felt that a diagnosis could cause issues there.
He is convinced many of his colleagues are in a similar boat.


It’s a shame really, as their particular character traits are also what makes them so good at their jobs, and it would be nice to think that people like them could be celebrated, specifically recruited and supported for the blend of skills and traits that are a benefit in roles like that, rather than having to hide away a part of themselves.

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TLIMSISNW · 01/10/2022 13:54

It's an utter disgrace that refusing a medical assessment is even an option.

This ^

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Allmarbleslost · 01/10/2022 13:54

Failing to seek a diagnosis is neglect in my opinion. I speak as an autistic woman who was diagnosed in adulthood.

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GeorgeorRuth · 01/10/2022 13:56

I suspected DS1 had an ASD, but schools said not, I didn't know much about it and it was pre Internet. So nothing happened, he was very high functioning and academic so slipped under the radar..he then developed MH issues mid teens and was finally diagnosed mid 20s.
I would have taken help if it had been available/ accessible.
If help is there take it, it may save you a whole heap of heartache and worry later.

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FivePotatoesHigh · 01/10/2022 13:56

It will potentially make it harder for them to access things like support at uni.

I think it’s neglectful personally.

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FrownedUpon · 01/10/2022 13:56

You’re wise to think about it carefully. I’ve seen a diagnosis lead to low expectations & unhelpful stereotypes being attributed to a child in my family. The ‘support’ they receive is negligible. A diagnosis isn’t always helpful.

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SeekingBalance · 01/10/2022 13:57

I'm a senco, I understand why you may not want to pursue a diagnosis. Particularly if they at the moment can function fine with the support in place.
However, be mindful that things can change as the child gets older, starts puberty, goes to high-school. You could find yourself in a situation where they rebel because they're confused by your actions, or become reclusive because they aren't coping socially.

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SteveHarringtonsChestHair · 01/10/2022 14:00

Allmarbleslost · 01/10/2022 13:54

Failing to seek a diagnosis is neglect in my opinion. I speak as an autistic woman who was diagnosed in adulthood.

Bollocks.

I work in a school and I see many children both with and without diagnoses. They are all supported through their own particular challenges and having a diagnosis doesn’t make them any more likely to actually come into school and stay there.

If they need one to one support or special adjustments made etc of course it would help, but if they are achieving well and are streets ahead of their peers, having taught themselves to read at nursery age and being “that kid” correcting the teacher at the age of 7, making them feel that there is something “wrong” with them isn’t always a positive thing.

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WellTidy · 01/10/2022 14:01

Just to add that you don’t know at this stage when you might need a diagnosis, as a diagnosis is what opens many doors. And when you need it, you need it there and then. An assessment, even privately (£££), can take months to complete.

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eyeteevee · 01/10/2022 14:02

I work in a school and I see many children both with and without diagnoses. They are all supported through their own particular challenges and having a diagnosis doesn’t make them any more likely to actually come into school and stay there.

Have you considered their needs after school age?

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SteveHarringtonsChestHair · 01/10/2022 14:04

eyeteevee · 01/10/2022 14:02

I work in a school and I see many children both with and without diagnoses. They are all supported through their own particular challenges and having a diagnosis doesn’t make them any more likely to actually come into school and stay there.

Have you considered their needs after school age?

Yes, as I said, my DS is an adult now and a diagnosis may have actually prevented him from getting the job he has now.

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Hoverfly1 · 01/10/2022 14:09

I pretty sure my sister is autistic and was never diagnosed as a child, she is now an alcoholic and has mental health issues so severe they she is completely unable to function and has almost entirely withdrawn from society.

I’m not implying that undiagnosed autism alone is going to cause this but I think that for my sister it has been the trigger for a chain of events in her life that have ended up here. I can’t help thinking that if her problems had been recognised when she was younger she might not have gone on to develop the issues she has now. We can’t do anything to make her get help now she is an adult either!

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Moonshine5 · 01/10/2022 14:10

We live in a free country, as parents we decide. Why should people be forced to be labelled either way? And I say this with no vested interest. No judgement, only support.

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