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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

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?

OP posts:
eyeteevee · 01/10/2022 14:11

We live in a free country, as parents we decide. Why should people be forced to be labelled either way?

It's a medical diagnosis, not a fucking label.

fluffinsalad · 01/10/2022 14:13

I think it totally depends on the child. My best friend never had her son diagnosed. He is very clever and she didnt want him labelled it. He is about to join uni, has found his people and it hasn't hindered him in any way.

However if I had a child that was struggling and needed support I wouldn't hesitate

eyeteevee · 01/10/2022 14:14

I think it totally depends on the child. My best friend never had her son diagnosed. He is very clever and she didnt want him labelled it. He is about to join uni, has found his people and it hasn't hindered him in any way.

However if I had a child that was struggling and needed support I wouldn't hesitate

Autism doesn't end when they go to uni though.

FallSky · 01/10/2022 14:15

I think diagnosis is really important so that the child/person understands themselves fully and doesn't constantly wonder why they might be different to their peers or struggle with/cannot do things others manage with ease.

whilst some schools may support without diagnosis, others will not and it can be incredibly hard to get the right support in place quickly if you're then on a waiting list.

fluffinsalad · 01/10/2022 14:17

eyeteevee · 01/10/2022 14:14

I think it totally depends on the child. My best friend never had her son diagnosed. He is very clever and she didnt want him labelled it. He is about to join uni, has found his people and it hasn't hindered him in any way.

However if I had a child that was struggling and needed support I wouldn't hesitate

Autism doesn't end when they go to uni though.

Not sure what your point is?

fernfriend · 01/10/2022 14:18

I just asked my autistic DC OPs question.

My DC said they would definitely want to know. Autism is a massive part of my DCs identity, and having a diagnosis is key to my DC understanding who they are. My DC says they knew they were different from a very early age but didn't know why. Their autism diagnosis came as a huge relief for them.

Early diagnosis is key to positive long term outcomes for your DC. Diagnosis means they will have access to in school support and a better understanding of who they are.

TLIMSISNW · 01/10/2022 14:18

It’s not about labels, it’s about medical diagnoses.

When we started the ASD pathway we were concerned about the label of autism, then we realised that DD would be labelled one way or the other. Either ‘weird’, ‘awkward’ or whatever, or she could get an accurate ‘label’ of autistic.

FallSky · 01/10/2022 14:18

No one has a problem 'labelling' (aka simply stating what someone's condition is) those with a physical condition though do they. Strange

TLIMSISNW · 01/10/2022 14:20

Also, to add to my post that autism isn’t a negative thing. It’s not something to need to bury your head in the sand over. If your DC is autistic then that’s just who they are. It’s not a negative thing. Knowing that they are autistic helps them to understand themselves better.

SpinningFloppa · 01/10/2022 14:20

My nephew is very clever, he went to a grammar school and is now at uni. My sister is a teacher and didn’t want him being stigmatised and judged and didn’t want it holding him back and it can affect people negatively even though people aren’t suppose to judge they still do and it can still go against you. She didn’t want people using it against him and it impacting how people treat him.

EilonwyWithRedGoldHair · 01/10/2022 14:20

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.

I guess you can't be 100% but we're almost certain DS is - sensory issues, social issues, meltdowns... I've had people I've never met come up and ask me if DS is autistic, family member who has worked with children with autism is convinced, the school have said off the record that they're almost certain he is, and keep talking as of he is, sometimes forgetting to put a disclaimer in.

But it's two years until we find out for sure.

As for the question, if there are problems that need addressing an assessment is helpful. If there are no problems you'll have a hard time getting an assessment. We've been told it will open doors - but we've also been told it should be needs based not diagnosis based, of guess that is true in an ideal world, but that's not where we're at.

fernfriend · 01/10/2022 14:21

TLIMSISNW · 01/10/2022 14:20

Also, to add to my post that autism isn’t a negative thing. It’s not something to need to bury your head in the sand over. If your DC is autistic then that’s just who they are. It’s not a negative thing. Knowing that they are autistic helps them to understand themselves better.

Yes! This!!!
Autism is a difference, not less.

fluffinsalad · 01/10/2022 14:21

FallSky · 01/10/2022 14:18

No one has a problem 'labelling' (aka simply stating what someone's condition is) those with a physical condition though do they. Strange

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

beachcitygirl · 01/10/2022 14:22

This should be viewed as seriously as. Parent refilling any other form of medical
Care for their children.
Child endangerment.

Despicable

TLIMSISNW · 01/10/2022 14:23

Fallsky doesn’t say it’s an illness (because, you’re right - it’s not). She says it’s a condition, which it is.

doesn’t mean it’s a negative thing though.

BryceQuinlanTheFirst · 01/10/2022 14:24

I pushed for a diagnosis for my son because it was so obvious to us and we wanted him protected and with the right support. There is no way I could not seek a diagnosis. The autism groups I'm in are full of adults who's parents didn't support them and they always felt disregulated and struggled so much. Why would I do that to my son?

OneRingToRuleThemAll · 01/10/2022 14:24

My children were diagnosed at age 4 and 12. Now age 11 and 14.

I was diagnosed at age 34, now age 35. Please get them assessed if you think it might be a possibility. I'm upset for younger me who found life so difficult but didn't know why.

ForfuckssakeEXHstopbeingatwat · 01/10/2022 14:24

I wonder if the answers would be different if it wasn't all such a bewildering minefield. Refer via GP, or school or self refer, with different responses depending on the route. If the child has MH difficulties as well, CAMHS will not deal with them once they have a ASD diagnosis because that's not MH. I spent ten minutes on the childs' mental health board yesterday and came away feeling sick and defeated about the complexity of diagnosis vs no diagnosis, CAMHS, EHCPs and the processes involved there. Maybe if it was a much simpler, linear and timely process people would routinely go for a diagnosis.

Birdie135 · 01/10/2022 14:24

No because that would be painfully short sighted and selfish

Notplayingball · 01/10/2022 14:25

TLIMSISNW · 01/10/2022 13:54

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

This ^

It's also an utter disgrace when trying to fight to have your child assessed for ADHD by your local authority and they are not even acknowledging it. Absolutely infuriating.

megletthesecond · 01/10/2022 14:25

I'm on the fence. A diagnosis could be held against them in future.

oobeedoobee · 01/10/2022 14:27

I don't understand the whole idea of suspecting your child has an issue/additional needs/disability or whatever, yet refusing to try to get help for them ?

This whole idea of 'labelling' kids is nonsensical, because if you can see they're 'different' then everyone else can too ? But NOT having a 'diagnosis' actually STOPS you being able to access the help they actually need.

And it's not necessary for the child to tell anyone about their 'differences' unless they want to i.e in job applications etc ? (Because of the help my child received in primary school, they were able to choose whether or not to access/request help in secondary and Uni. Prior to getting 'diagnosed' and receiving help, they were labelled 'lazy' and 'rude' by teachers, and really academically struggling because of open plan classrooms and distractions etc, when it was ASD !)

HalfBloodPrincess · 01/10/2022 14:27

My 5 and 3 year old both have an autism diagnosis. Both have very complex needs

it’s only through their diagnosis that we realised ds(17) is also very likely on the spectrum too. He’s adamant that he doesn’t want to go through the process to find out at this moment in time; in his words, he doesn’t feel it would make a difference. He knows the option is always there.
if he was younger and was my choice, I would definitely push for an answer.

Imogensmumma · 01/10/2022 14:27

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.

Agreed!! If they fell over and hit their head you wouldn’t question getting them seen medically , so how can you refuse to get your child the help they need and deserve!!

I’m a teacher and I see this so often and it’s so cruel ….. as the years go on the child gets further and further behind in their learning and is then left out socially as they can’t play and communicate (at times not all situations obviously) with peers their own age.

It’s taking away your child’s potential in life and so cruel

RoomOfRequirement · 01/10/2022 14:31

Fuck the world is so unfair with who it gives children to.