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?

[containsnuts]

@BryceQuinlanTheFirst

@containsnuts

After the private diagnosis it accelerated us seeing NHS services though they insisted on their own diagnosis too which was such a waste of resource, they just produced a shorter report than the one we had. It meant that we were taken more seriously I think and we had more "clout" to argue for provision. Still was a bit of a battle

Thanks for your reply.

It's always complicated mixing NHS and private healthcare.

[BlankTimes]

It's always complicated mixing NHS and private healthcare.

The answer is to choose a private company that also does work for the NHS, using the same people, using the same diagnostic tools, then the NHS cannot dispute the veracity of the diagnosis.

[ParrotPoppy]

The school and LA can’t refuse support or refuse to accept a diagnosis just because it is private. Although support in school should be based on needs rather than diagnosis.

[Turquoisesock]

I didn’t get my asd diagnosis as a child. My parents didn’t want to label me.

As an adult my issues were misinterpreted massively and I got accused of something horrific. I had to fight to prove my innocence then got the asd diagnosis which showed everyone the real issue was asd and not what everyone thought. They saw something and it had been a case of 2+2=578 sadly because they didn’t understand why I behave how I do

[Miffee]

@Turquoisesock

I didn’t get my asd diagnosis as a child. My parents didn’t want to label me.

As an adult my issues were misinterpreted massively and I got accused of something horrific. I had to fight to prove my innocence then got the asd diagnosis which showed everyone the real issue was asd and not what everyone thought. They saw something and it had been a case of 2+2=578 sadly because they didn’t understand why I behave how I do

Did your parents discuss this with you?

[Turquoisesock]

@Miffee

Did your parents discuss this with you?

Yes - in primary school they rejected the offer of someone to come and observe me.
They told me I needed to change but I couldn’t
At secondary I school refused and again they were offered assessments and declined choosing to take me to a different dr and I was given antidepressants instead. My dm especially did not want ‘a label ‘ I was told repeatedly I needed to hide how I felt etc

[Turquoisesock]

Clearly my parents were happy to accept the (incorrect) diagnosis of depression but didn’t want a diagnosis of ASD. I’ve queried dm since and she just says that 1). She doesn’t think I’m autistic and 2). She was trying to ‘protect’ me by not getting me labelled (but I was labelled - as weird by my peers, as difficult and complex by my teachers and then as an adult my actions completely misinterpreted as something serious and concerning 🤦‍♀️

[Miffee]

@Turquoisesock

Clearly my parents were happy to accept the (incorrect) diagnosis of depression but didn’t want a diagnosis of ASD. I’ve queried dm since and she just says that 1). She doesn’t think I’m autistic and 2). She was trying to ‘protect’ me by not getting me labelled (but I was labelled - as weird by my peers, as difficult and complex by my teachers and then as an adult my actions completely misinterpreted as something serious and concerning 🤦‍♀️

That's awful.

I am interested as a parent who didn't get a diagnosis for their child.

I have discussed with my child but in terms of "you almost certainly have ASD". I haven't behaved at all like your parents indeed I am baffled by that behaviour.

[Turquoisesock]

@Miffee

That's awful.

I am interested as a parent who didn't get a diagnosis for their child.

I have discussed with my child but in terms of "you almost certainly have ASD". I haven't behaved at all like your parents indeed I am baffled by that behaviour.

Yes I was repeatedly made aware how they were offended it had even been suggested. Dm told me I needed more rules and to be ‘de sensitised’ so anything that I struggled with she repeatedly subjected me to in the hope of appear ‘better’ but it made me worse ! It was always clear that she was embarrassed at the prospect. She would list reasons how she just knew I wasn’t autistic as if she was trying to convince herself.
As an adult I couldn’t even get her to help with the developmental part of my assessment they had to rely on my account and what info I knew from dm plus dh as he has known me for 25+ years so could give a lot of insight

[Miffee]

@Turquoisesock

Yes I was repeatedly made aware how they were offended it had even been suggested. Dm told me I needed more rules and to be ‘de sensitised’ so anything that I struggled with she repeatedly subjected me to in the hope of appear ‘better’ but it made me worse ! It was always clear that she was embarrassed at the prospect. She would list reasons how she just knew I wasn’t autistic as if she was trying to convince herself.
As an adult I couldn’t even get her to help with the developmental part of my assessment they had to rely on my account and what info I knew from dm plus dh as he has known me for 25+ years so could give a lot of insight

Even if you didn't have ASD I don't understand the logic.

I have always tried to find strategies to support my child. I knew if I ever met something we couldn't figure out (me and my child) I would get them back on the pathway. I know it's still a risky approach.

I can't believe your parents basically tried to bully you into being not autistic!

[Turquoisesock]

@Miffee

Even if you didn't have ASD I don't understand the logic.

I have always tried to find strategies to support my child. I knew if I ever met something we couldn't figure out (me and my child) I would get them back on the pathway. I know it's still a risky approach.

I can't believe your parents basically tried to bully you into being not autistic!

DM devised her ‘de sensitisation’ programme. Looking back it was just emotional abuse. She said she wanted to help but it made me worse. It was like exposure therapy plus humiliation it was horrific

[Morph22010]

@containsnuts

Had a question I thought I'd pop back to this thread with it.

For anyone who's gone privately for diagnosis, were you then able to access NHS and school services any quicker or did you have to go privately with that too? Just wondering what happens after private diagnosis. Thanks.

Where we live nhs don’t have any asd services anyway and kids get discharged on diagnosis so it won’t make any difference.

[Untitledsquatboulder]

@containsnuts school have snapped into action since ds2 got his private diagnosis. We plan to use it to get more support for him at university when the time comes. Its also writ large in his medical notes which is useful as he's currently in hospital for something unrelated and have used it to get "reasonable adjustments " made to his care.

[applecatchers36]

Turquoisesock what your mother did sounds horrific am so sorry to hear that you went through that. It made me think of a book that has come out that frames some sensory experiences by those on the autistic spectrum through a trauma lens, which might be of interest..

www.goodreads.com/en/book/show/55521586-sensory-trauma