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?

Protections until the equality act are based on disability not diagnosis

Thank you very much

My anorexia was put down to attention seeking by my school until I was obviously very unwell, despite my friends trying to tell them.

Protections until the equality act are based on disability not diagnosis

But without the diagnosis how do you prove disability?

The traditional way of treating Anorexia isn’t autism friendly. A diagnosis has been crucial for my daughter.

I held out for 10 years on a diagnosis despite it being obvious and my DD attending a ASN primary before I moved her to mainstream.

she then needed several baby teeth removed under a general anaesthetic and it was a nightmare. Because there was nothing ‘official’ on her medical record they wouldn’t give sedatives etc so lots of fights ensued. After that I asked for a referral and she was officially diagnosed. Now if she needs anything in the future it’s there in black and white

if someone has autism they are still the same person with or without the diagnosis.

however having a diagnosis helps them to understand who they are and why they respond as they do. If they need extra assistance it makes it easier to access and in theory should help it be focused help.

even by resisting stepping onto the diagnostic pathway your risking sending a message that you think being autistic is a negative thing.

even if ultimately they don’t meet the criteria for a diagnosis of autism tne process can be very e lightening to understand the person.

There may not be much support available to children who get a diagnosis (though from this thread it seems some are a lot better). However certainly in my area non available for adult receiving a diagnosis. There seems to be a feeling that you can cope, but I really only cope with family support.

Being diagnosed as a child would have made a massive positive difference for me even though I may appear high functioning I’m not.

I tread lightly on this because I WAS a misdiagnosed child and put through years of hell and a tonne of dangerous medications that damaged my life and body because of it.

I'm all for investigations and getting treatment when something is wrong (I was eventually correctly diagnosed but the damage was already done) but people are so quick to lable EVERYTHING as either autism or ADHD when the frustraition and lashing out in young children caused by so many other health conditions manifest the same way.

I think my personal experiance gives me unique insight and me a position to see things most others don't though.

Many people just want to wack any lable on a child thats not acting 'normal' and those lables are usually whatevers socially 'popular' at the time (because thats what they know and are aware of) rather than whats actually correct and I would suggest anyone whose truely advocating for their child to check all routes not just latch on to the first thing you hear of.

This is what I think.

It’s incredibly difficult and lengthy to get a diagnosis. They’re not handed out Willy Nilly.

Because all the same impairments will be present whether someone has a diagnosis or not and the impairments will have the same effects on the individual whether diagnosed or not. How one can evidence the impairment and the effects of that impairment depends on what the impairment is but it could include any of GP notes, school reports, emails, occupational health assessment.

Or are you saying you don’t think anyone without a diagnosis can never be classed as disabled?

Mine was put down to attention seeking too.

It was a mix between strep throat (which I had been complaining about for months, I could barely breath by the time I was admitted never mind swallow) and the stupid drugs the forced me to take which as a side effect where appitite suppresents so I was already severely underweight (which they knew was they drugs) and an insomniac BEFORE getting sick and losing more weight.

All entirely the result of being misdiagnosed and that misdiagnosis meaning they wouldnt take me seriously, when you have ADHD plastered across your notes (I ACTUALLY have cerebal palsy, so complete misdiagnosis that I had to deal with for 8 bloody years) they DON'T listen to you.

Even if I had had ADHD (which I don't) I can't see any time in those 8 years where that diagnosis was attached to me where it would have helped me, if anything I was treat worse because of it.

Because all the same impairments will be present whether someone has a diagnosis or not and the impairments will have the same effects on the individual whether diagnosed or not. How one can evidence the impairment and the effects of that impairment depends on what the impairment is but it could include any of GP notes, school reports, emails, occupational health assessment.

I couldn't just elk into my work and tell them I'm autistic and need x/y/z adjusted though, without a diagnosis. I have very little to evidence on my GP notes as, is commonly seen, I rarely seek help. As a child I was 'shy' - I was also neglected and abused.

Or are you saying you don’t think anyone without a diagnosis can never be classed as disabled?

No I definitely didn't say that. I asked how you prove it.

I can see where you're coming from with this- it's attempting to avoid a label being placed on your child and trying to prevent people from viewing them as different or disabled (i am disabled, I'm not being ablest) . It makes sense but then that has to weighed up with the benefits of diagnosis, which usually far outweigh the disadvantages.

I believe they can't join the RAF which is a shame for my eldest as it would be a good way for them to pursue their chosen career.

Given the nature of the diagnostic criteria the chances of someone being misdiagnosed with autism/adhd or similar are remote. Many more people will slip through the net than are caught that shouldn’t be!

its not a label it’s a diagnosis. Unless you think asthma is a label? Or diabetes?

My SENCO niece told me recently that of the families she worked with who did not want to pursue a diagnosis for their clearly ASD children, it was in every case opposed by an equally clearly undiagnosed ASD parent.

No, you can’t tell them you are autistic if you aren’t diagnosed. But you could, for example, inform work you have a disability that means you struggle to process verbal information therefore require written instructions rather than verbal instructions, thank you. Then if asked you could provide e.g. a schools IEP (for which a diagnosis isn’t required) with that noted on there or an email chain from college showing the same. The same for other reasonable adjustments that are required due to the disability.

People could also use the same evidence they use to apply for DLA, PIP, blue badge, disabled bus pass, access card… without having a diagnosis.

The Equality Act specifically states the cause of impairment doesn’t need to be established, so they must accept it is possible to prove disability without a diagnosis.

OP is clearly taking on board every post that corresponds with her opinion and ignoring those that don't! OP is only replying to those comments she likes. Typical.

I wish I had been diagnosed as a child because it would have helped to know that there was a good reason for my being different and that I wasn’t just weird. I wouldn’t have spent so much effort just trying to appear ‘normal’ and I might have had accommodations for things like executive dysfunction that I suffer from to this day, despite being someone who was always academically gifted and who people always think has their shit together.

I may look HF, but I’ve got numerous suicide attempts behind me and struggle in so many ways that aren’t visible on the outside, no matter how competent I may appear. Discovering there was support at university when I returned for my MSc was amazing. I really wish I’d had it available to me as an undergrad.

No, you can’t tell them you are autistic if you aren’t diagnosed. But you could, for example, inform work you have a disability that means you struggle to process verbal information therefore require written instructions rather than verbal instructions, thank you. Then if asked you could provide e.g. a schools IEP (for which a diagnosis isn’t required) with that noted on there or an email chain from college showing the same. The same for other reasonable adjustments that are required due to the disability.

I have nothing to provide. I'm autistic. I can communicate my needs because I know that. For the 40+ years prior though, I wasn't able to ask anyone for anything.

People could also use the same evidence they use to apply for DLA, PIP, blue badge, disabled bus pass, access card… without having a diagnosis.

Can't even get these things with a diagnosis

The Equality Act specifically states the cause of impairment doesn’t need to be established, so they must accept it is possible to prove disability without a diagnosis.

You make it all sound so easy but in the real world it isn't so.

I didn’t say it was easy, I said it was possible, because it is.

I have nothing to provide. I'm autistic. I can communicate my needs because I know that. For the 40+ years prior though, I wasn't able to ask anyone for anything.

Yes, you could have. Again, reasonable adjustments are based on needs not diagnosis. You not feeling able to, for whatever reasons, isn’t the same as legally being unable to. It’s highly unlikely you didn’t have any difficulties and evidence otherwise how did you suspect you were autistic and how did you get a diagnosis? Because in order to be diagnosed one must have persistent difficulties that “limit and impair everyday functioning”.

My daughter has just turned 10. For years Iv thought she was on the spectrum. No one else can see it apart from me and her dad. I’ll give an example, very sensitive to clothes, if it dosent feel right, she won’t wear. Hates baths and washing hair as hates the wetness when she gets out. Struggles with showing emotion. Dosent make any conversation. Has a close few friends, but I feel like she’s a spare part. Very quiet. It’s getting more noticeable as she’s getting older. She’d be utterly devastated if she had autism, I don’t mean that in disrespect. I think because she’d be singled out in her class. I’m going to have a quiet word with her teacher. I feel like Iv buried it for too long.

She’s been able to mask it at school. But she’s getting older, I can see it more. Just want her to get the help she needs.