What's the point in ASD diagnosis?

[Swalewhale]

I have a strong suspicion DD aged 7 is on the spectrum.
After googling, I see the typical route is to go the GP and then go on the waiting list for assessment.
My question is, if you have gone through this process, and they eventually confirm it, then what? How will this diagnosis benefit our lives? It's not something they give you medication for, you can't fix it so does it change anything?

I want to be talked into getting her diagnosis but I'm not sure why. She is quite sensitive so I don't want to put her through unnecessary assessments or to make her feel like she's different.

Thank you for your reply. That is so good to know. And very interesting to see how much companies differ within the same industry.

Interestingly nobody e er asks this question about any other medical condition. However, there is such a stgma to ASC that some parents will actively avoid getting a diagnosis.

Good point.

It depends on how far down the spectrum she is. Everyone is on there somewhere, there's little point in getting a diagnosis if it isn't going to make much of a difference to how you do things

It amazes me that some people still come out with this bollocks.

The spectrum isn't a line that you are along and no, not everyone is 'on the spectrum somewhere'. Some people have preferences/quirks/behaviours/personality traits that might resemble autistic traits but that's not the same as being 'on the spectrum' FFS🙄

hmm, this comment re everyone is on the spectrum irked me as well (as the mother of an autistic adult son). Also, I'm intrigued at diagnosed as a baby? Who by?

@Risslan

It depends on how far down the spectrum she is. Everyone is on there somewhere, there's little point in getting a diagnosis if it isn't going to make much of a difference to how you do things.

Do you actually think NT people, those who are not not diagnosed with/ suspected of having autism, are on the autistic spectrum?

I'm flabbergasted.

I know ,nobody would diagnose a baby with autism ,my son was diagnosed at three and he is severely impacted by his autism and it was very obvious but it still took seven months of assessments from ,nursery ,portage, speech and language , educational psychologist and paediatrician to get an official diagnosis.

@boboshmobo do you mind me asking how you went about finding somewhere private to diagnose your child please? I have a 17 year old son and at the beginning of the journey towards diagnosis. Thank you

It depends on how far down the spectrum she is. Everyone is on there somewhere, there's little point in getting a diagnosis if it isn't going to make much of a difference to how you do things.

why (and no one has answered this who claims we're all on the spectrum) ignoring those with severe learning disabilities, is it a diagnosis if we're all supposedly on the spectrum somewhere?

@paisley256 if you join local ASD parent groups on Facebook, you will be able to get recommendations.

It depends on how far down the spectrum she is. Everyone is on there somewhere, there's little point in getting a diagnosis if it isn't going to make much of a difference to how you do things.

Not this again. The spectrum isn't a line. You cannot be a certain amount "down" it. It is a spectrum, and the profiles of different autistic people have different spikes. That is why it makes no sense when people say things like someone is "severely autistic". It's meaningless.

Secondly no, everyone is not on the spectrum. It's an autistic spectrum measuring the characteristics of autistic individuals.

@Phineyj that's very helpful, thank you.

It helped massively to understand our dd. Not so much when she was younger, but niece she got into her teens, it helped her to understand herself.

it was a huge help to us.

@paisley256 .. we used the psychiatrist who diagnosed her depression . Before that essentially Google and getting a feel for someone who knew about dd issues .

I can pm you the details of you want ..

Basically if you are paying it's pretty easy tbh .

As someone who is currently on a very long waiting list for an adult assessment, please do it.

It would have helped me make so much sense of myself and the world, and put strategies in place. I’m still trying to learn healthy coping mechanisms at 30.

Basically if you are paying it's pretty easy tbh .

I completely disagree. We paid £2k for a private assessment when DD was 8 and they didn't diagnose her. She was NHS diagnosed when she was 9 (had been on the list since 6 years old)

The idea that you can simply pay for diagnosis is so wrong. You pay for an assessment. The majority of people who get as far as paying for said assessment will get the diagnosis though, as nobody is spending that kind of money without being as sure as they can be that they/their child does meet the criteria for diagnosis.

Where we used to live we could get same support with or without diagnosis and were well supported. Then we moved counties and there was no support due to lack of diagnosis and had to start 2 year waiting list again but he was too anxious to do by then. Its illegal not to give support due to lack of diagnosis but sadly no organisations are held accountable for this money saving tactic.

@boboshmobo yes I'd appreciate that thank you.

Well I found it easy but then I manage things fairly easy . I have a son with sn so I'm used to dealing with services .

In our local area (UK major city) we are phasing out ASD diagnosis and alongside this the local support systems are phasing out the need for a diagnosis to access support. Massive resources are required for the diagnosis process (over 150 children being added to the wait list every month) which is resulting in very little funding left over for helping children and families after diagnosis. Also, with the high numbers of people with ASD in the population another way of looking at it is that it's just a part of normal human variation. I could be wrong but I feel this is they way the rest of the country will also go. I'm not sure how I feel about it especially after reading this thread. I'm just stating the reasoning of the decision makers -this is not my opinion.

Normal human variation?

It's literally a disability.

My child is hugely disabled by his autism,he's completely nonverbal this is not a normal human variation,talk about minimising. It and the impact it has on peop!e .

Where is this UK major city that is moving to a blanket policy of not assessing and diagnosing a disability? And has until this point been unlawfully refusing support to those without a diagnosis?

A disability is not just “a part of normal human variation”! What other disabilities do you think are also normal human variations?

Having the diagnosis will help your daughter so much. I've had my DC diagnosed and now the school are applying for funding to support DC. An ehcp if needed will stay with your child through out school life, I think up to age 25 (but may be wrong) and the schools have to work towards meeting the targets with your daughter.
Also it will help your daughter realise why she feels the way she does, if she struggles socially then she will be able to understand why. It will help your daughter have more of an understanding of herself. If you think she may have asd then do it!! It honestly will only help!

Are they also refusing to diagnose diabetes? I mean a significant proportion of the population have it, so just a normal variation, and if you don’t diagnose you can save money on treating that too?