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

[coodawoodashooda]

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?

[Jujujuly]

@ohthehorrorthehorror

We have some friends who buried their head in the sand about their son who was showing signs of asd at four, if not earlier. He was academically brilliant, but as he got into secondary school was showing increasingly strange behaviour and was very socially isolated.
He had a breakdown at university, has been in and out of hospital and has received an asd diagnosis at 24 and a schizophrenia diagnosis at 25. He is now in hospital and it looks like he will never be able to lead a normal life, hold down a job, relationship etc.
A friend's son who was in the same school year as him has said it was criminal that his parents never went for a diagnosis, but I think it was mostly denial on his father's part, who is so obviously asd himself (as were his father and brother).

No ASD diagnosis/support would have prevented him from developing schizophrenia unfortunately. Poor guy.

[ParrotPoppy]

@Sickoffamilydrama

The Army, Navy and RAF are desperate for recruits do you not think that they have good reasons for not allowing people with an autism diagnosis in.

Why would you decide not to get a diagnosis for your child just because they might not get in the military?
If they did grow up and join the army they'd still be autistic just in danger because no one would know.

Our DD is autistic and whilst I would be sad for her if she couldn't follow a certain career path it wouldn't stop me getting her assessed. Many if us can't do certain careers I wanted to be a singer but problem is I can't hold a tune!

In the Navy at least autism isn’t an automatic barrier, each case is judged individually.

[Lovelyricepudding]

Laughing at all the comments saying you need a diagnosis because then you get support. Since when did an autism diagnosis come with support?

[Tinks1876]

I strongly suspect that my DD may have asd and I won’t be seeking a formal diagnosis. My reasons? I don’t want her to be labelled, I don’t want her to have to jump through hoops to be diagnosed and she wouldn’t cope with the assessments, she functions okay at school, they have plans in place to support her learning which she does find challenging but she wouldn’t get anything additional with a formal diagnosis, so what is the point?

She is still at primary school so my opinion may change as she gets older but for now we are happy as we are.

[univer]

I got accused of FII (fabricated or induced illness) with my other dc who have autism and other medical issues so can’t get my youngest diagnosed and they are very clearly autistic . We wont be able to access support so I can’t send them to school and will have to home educate

[Blix]

@fluffinsalad

See thats why some people dont like labelling their kids. You posts implies that Autism is an illness, its not.

So is it a medical condition or not then?

[OriginalUsername3]

YABU. I really don't think it's your right not to seek diagnosis and allow them to receive support. They can choose the level of support they receive as they get older. They can choose to inform universities and employers and seek adjustments or not. But you don't have a right to take that choice away.

[Jujujuly]

@OriginalUsername3

YABU. I really don't think it's your right not to seek diagnosis and allow them to receive support. They can choose the level of support they receive as they get older. They can choose to inform universities and employers and seek adjustments or not. But you don't have a right to take that choice away.

But they’d be free to seek a diagnosis for themselves by that point wouldn’t they?

[Lovelyricepudding]

May be a good idea to hold off if you want to emigrate to Australia.

[sevenbyseven]

I know two families who weren't encouraged to get a diagnosis by school and regretted it when it came to starting secondary school. It could have helped them access finding and support, and could have enabled them to get a place at a more suitable school than the nearest one.

[Lovelyricepudding]

@sevenbyseven

I know two families who weren't encouraged to get a diagnosis by school and regretted it when it came to starting secondary school. It could have helped them access finding and support, and could have enabled them to get a place at a more suitable school than the nearest one.

If only...

[Thriwit]

I’m getting the impression here that a lot of people don’t really know what autism is. In order to be diagnosable, there have to be persistent deficits in social & communication skills, as well as restrictive and repetitive behaviours, and these have to markedly impair the person’s life. Not liking loud noises and being shy really don’t factor into it.

I’m concerned that some people who say they think their kid has autism but they won’t get them assessed are just attributing facets of their kids’ personalities to autism, when they don’t actually have autism.
“This thing my kid does isn’t how I think a kid should be, so they probably have autism”. 😬

[MinervaTerrathorn]

@PeonyPansy

@MinervaTerrathorn your diagnosis sounds like it was badly handled and I can understand in that case it probably didn't benefit you. The people I know have all realised in their late 30s and early 40s that they probably are autistic. So they've had decades of feeling not good enough.

Given we're much more aware of autism now I don't think you'd probably get to as old as that now I suppose. If a child was really against an assessment I wouldn't force them into it, assuming they were in their early teens. I think having an informed conversation with a child about it is a different situation to just never mentioning it to them. Even without a formal diagnosis, if they are aware it might be a factor that still gives them the opportunity to take account of it. If that makes any sense.

I was 13 and I wasn't told what was going on, all I remember is being for an assessment at the children's hospital then given a diagnosis. Then everyone at school knowing. People couldn't say the word autism or aspergers in my presence for years, and I doubt I would cope well if either of my parents mentioned it now, we don't talk about it. The only family member I talk about it with is my sibling who is undiagnosed autistic.

I do think I would have been diagnosed much earlier now as I was almost non verbal at three and had a difficult start to school and a one on one classroom aide for a year.

I think a child in upper primary or older should ideally be involved in the decision.

[Sunmoonstarsandsea]

@Lovelyricepudding

Laughing at all the comments saying you need a diagnosis because then you get support. Since when did an autism diagnosis come with support?

I was reading the thread like this as well.

indeed. Just what support would that be?

[azimuth299]

@Lovelyricepudding

Laughing at all the comments saying you need a diagnosis because then you get support. Since when did an autism diagnosis come with support?

Obviously support could be better, but I have had a lot of support that wouldn't have been available without a diagnosis.

A very helpful parenting course (Cygnet)
DLA which went to providing for his needs e.g. buying a weighted blanket or fidget toys, investing in his special interests etc.
An EHCP including a 1:1 TA
Carers' Allowance when his needs meant that working wasn't possible for me
Access to a local autism charity which runs sensory-friendly events for autistic children to connect (e.g. they rent out clip n climb and turn the music off and invite a small group of children to climb in peace when they wouldn't usually be able to cope)
Max Card which gives discounts
A lot of people can get a free bus pass
Free or discounted tickets for many attractions as disabled person + carer
A local community of parents in the same boat who share experiences and help each other

All of which have improved my child's life a lot.

[NoYouSirName]

The only thing that makes autistic people feel there’s something ‘wrong’ with us is NOT having a diagnosis to explain why we struggle to fit in.

I was that child you describe and diagnosed later in life. Ended up with mental health issues and never really got off the ground with work despite going to Oxbridge.

It’s also naive to think all autistic children are well supported in schools on the basis of need. They should be but many are not.

[Thriwit]

@Sunmoonstarsandsea

I was reading the thread like this as well.

indeed. Just what support would that be?

DS has social and emotional skills workshops and programmes at school, forest school sessions, more specific instructions for tasks, the teachers understand he might do intense questioning to understand something, he has the SENDCO centre to go to at lunchtime so he’s not stuck for what to do, they also give him any equipment he’s forgotten, & he leaves class 5 minutes early to avoid the crowds.

[SpinningFloppa]

@azimuth299

Obviously support could be better, but I have had a lot of support that wouldn't have been available without a diagnosis.

A very helpful parenting course (Cygnet)
DLA which went to providing for his needs e.g. buying a weighted blanket or fidget toys, investing in his special interests etc.
An EHCP including a 1:1 TA
Carers' Allowance when his needs meant that working wasn't possible for me
Access to a local autism charity which runs sensory-friendly events for autistic children to connect (e.g. they rent out clip n climb and turn the music off and invite a small group of children to climb in peace when they wouldn't usually be able to cope)
Max Card which gives discounts
A lot of people can get a free bus pass
Free or discounted tickets for many attractions as disabled person + carer
A local community of parents in the same boat who share experiences and help each other

All of which have improved my child's life a lot.

You can get dla without diagnosis

[NoYouSirName]

univer you can’t win. Home Ed and avoiding professionals will be just as much of a red flag. Damned if you do and if you don’t.

[azimuth299]

@SpinningFloppa

You can get dla without diagnosis

It's a lot easier with a diagnosis though.

[SpinningFloppa]

@azimuth299

It's a lot easier with a diagnosis though.

I got awarded 3 times without it never had any issues, had lots of evidence though I didn’t find it difficult at all didn’t have to fight for it was awarded first time each time

[NCFT0922]

No, never considered it. Nor do I consider neglecting my child in any other ways.

[azimuth299]

@SpinningFloppa

I got awarded 3 times without it never had any issues, had lots of evidence though I didn’t find it difficult at all didn’t have to fight for it was awarded first time each time

That's really great to hear. I think you'd probably be in the minority though, from everything I've heard you have a far greater chance of success with a diagnosis.

[NoYouSirName]

Support my dc has in school:

access to the sensory room.
pass to leave class when overwhelmed.
Exempted from swimming and from uniform rules.
visual timetables
ELSA small group work

My other child had 1:1.

In theory support should be need based and not due to diagnosis. But in reality the diagnosis provides evidence of need.

[MonkeypuzzleClimber]

We delayed getting a diagnosis for my daughter until secondary school. She was very bored academically in primary, and we felt her school’s attitude to wonky cogs would have meant her frustration at this would instead have been blamed on neurodiversity. She was also desperate not to be different at that age, and might not have been cooperative, and we’d missed the boat to get it before she understood why she was being assessed.

She is now in a SS grammar school, where there are quite a lot of kids with autism. We waited until she became more aware of her differences and was positive about pursuing an assessment, and open to a diagnosis. She now has a diagnosis of ADHD and autism. It’s really no big deal in her school or amongst her peers. She’s comfortable with a diagnosis and rather relieved. Hopefully it will help her access support if when she needs it. It helps with her self understanding and it’s a shorthand for others to understand her behaviour and personality quirks. We’ve always presented it in a positive way; things she find hard are the flip-side of her strengths.

On a sidenote I don’t understand why people without any personal experience would comment on a thread like this. Hew could you possibly have any real insight! It’s far more interesting to hear if anyone with a diagnosis themselves regrets it? I’ve not heard of anybody…