Why was this allowed in the 80s/90s?

[Anxiousanx]

My parents were allowed to decline my ASD diagnosis ?

At age 8 the school started pushing for meetings with them and I was having severe difficulties. They didn’t want to engage.
The following year the school had someone come in to observe me.
My parents made it clear to me I wasn’t to ‘get a label’ and needed to ‘behave normally’

2 years later at a different school with even more difficulty I was involved in meetings and had to go to what i assume was camhs or whatever it was called then ?
I saw doctors and a speech therapist and I think a psychiatrist?
My parents were given the likely diagnosis and asked did they want to proceed with that and said no as again, didn’t want me to have a label and this was allowed ?
I’ve seen some of the clinic letters in recent years and I’m really astounded and don’t understand why this was allowed ?

The evidence is that it's possible to treat anxiety in autism but CAMHS generally won't even try.

I know a young lady who is so angry her mother dragged her to a psychiatrist aged 14 (she said it was actually just normal teenage friendship issues and she never was diagnosed with anything) just this 6 weeks of visits means she was refused entry to the RAF aged 24.

Going off topic a bit, but she should be able to lodge an appeal with the RAF. I've known someone do this successfully with the Army (and in their case, they had a misdiagnosis on record). They had to see some kind of army specialist and provide evidence that they had no symptoms of the condition, and after all that were allowed to join up. No guarantees of course, but if her heart's set on it it's definitely worth a try.

There's also the aspect that it can be a form of Narcissistic abuse. How can somebody completely convinced of their utter superiority in all things, possibly have an officially defective child? When their genes were clearly the most perfect genes of all?

No, there can't be a reason encoded in the child's DNA, it has to be that the child is merely lazy, intentionally pretending to be stupid, clumsy, deliberately trying to show them up by choosing to be physically or mentally inadequate, that there is absolutely nothing wrong at all that it's all completely in the mind of others (for the latter, this is often interpreted as teachers picking on their child, the Machiavellian conspiracies of Big Pharma inventing something to sell more drugs or the other parent clearly having Munchausen's by Proxy)

And if the differences and difficulties cannot be dismissed any more, it's declared that would be of no use whatsoever to label a child of theirs with an explanation, diagnosis or official recognition - because it would be humiliating for the perfect Narcissist to have a child carrying that diagnosis or, if the diagnosis came unexpectedly (such as when they thought their child was being assessed for being far smarter than any mere human, only to be told that yes, she's smart, and she also has ADHD/ASD), that it must never be shared with the child or anybody else, it has to be kept a secret at all costs and denied throughout. Which is where you also see external factors being blamed for symptoms - blue sweets, fizzy drinks, sugar, vaccinations, lack of exercise, boring teachers, constipation...

After all those centuries of children being harmed by not having access to medical treatment/support because it cost money or didn't exist, it must have taken time to realise that actually, some people don't want their children to access medical treatment/support because it hurts their ego for them to need it in the first place.

See that is one concern that if the miliary can knock you back for having ASD then who else can and will discriminate?

Given many ASD people like order and precision in their lives then some would presumably will do very well in military careers.

I’m pretty sure it’s still used as a criteria to refuse immigration entry to places like Australia and New Zealand.

@drspouse yes sorry, maybe I've misunderstood. Yes autistic anxiety can be treated but the treatment is different because of the autism. If your ds is autistic it's important that his therapist knows that.

It is scandalous that CAMHS doesn't often offer appropriate therapy for autistic children and young people though.

This still happens now. I am a teacher and I've taught two primary aged children very recently who were very clearly autistic. Parents would begin the process and then back out, deciding everything was fine. I can't for the life of me understand it, but it's their choice. 🤷🏽‍♀️

I would have thought that your medical history might show some of this diagnosis and if not then you can go to the GP and explain your history and they can then refer you on.

You are in your early 40s. So 25 years as an adult where you haven’t pursued further to diagnosis. Has something triggered it now? I can understand you thinking it would be easier if you had been diagnosed as a child but something has held you back in same way your parents shied away from a formal diagnosis.
You should be able to view your medical records online. I bet there will be correspondence. If you want to I’d definitely look at pursuing now - you were investigated as a child but no formal diagnosis can you be referred now.

Yes, I worked with two sets of parents going through diagnosis for their child at the same time. One accepted the diagnosis, the other not.

The accepting parent thought it would unleash lots of support. It didn't. Working with the child it didn't tell me anything I didn't know about him or change the way I worked with him as he was the same child as before the diagnosis.
The second family, didn't want the label, knew that there would be no support and as above knew that the diagnosis didn't change their child. We all knew him well enough to continue in the same way we had. These parents were also worried about the impact on future choices and careers, with a label in place.

I don't even know if my child would have received a diagnosis. All I know is that they said he had autistic traits. They didn't seem particularly keen for us to proceed further and we didn't feel at the time that the benefits would outweigh the distress the process was causing him at the time. In the future we may revisit depending on what he would like to do.
He wouldn't need extra exam time anyway. He does not struggle in any way academically.

Also in my experience having an asd diagnosis can be a barrier to receiving support from CAMHS.

In the 80s/90s it's quite possible that, that decision really was in your best interest.

We live in an entirely different world now but back then you might have been labelled and outcasted and had a lot of opportunities denied to you.

This is my understanding too, certainly in the case of New Zealand. I think the rational is to do with using public resources.

This still happens. When I had my own diagnosis I was told very clearly that I had the right to withdraw from the process at this point and no diagnosis would be issued, and gave me a momet to consider what the negative points of having that "label" might be. Same again later when DC was diagnosed - they did all the assessments, but before issuing the diagnosis they reminded me that once a diagnosis is issued it can't be "removed" so I had to confirm that I was sure that this was what I wanted to happen.

For me, having a diagnosis has only been positive but I could see that for some people who want to learn to "pass" as neurotypical it might be seen as something they would rather not have "officially on record". Certainly I can well believe that there are plenty of people in the older generation who would consider the "label" to be something that should be avoided if possible, and I can well believe that there are some who would prefer not to know rather than have the "label", and might have tried to have the "label" removed if a diagnosis was confirmed when a child was young and the child later went on to develop skills at masking and passing. So your situation doesn't suprise me at all OP.

We have found that at least with school/OT the assumption is that using strategies that work for autistic children also work with him. However with that diagnosis on his record CAMHS would refuse to see him at all.

Different but similar - My dd was recently dx with Chronic Fatigue Syndrome/ME. The psychiatrist asked if I wanted to accept the dx officially, I could refuse and they’d not give the formal dx

My view is/was, if my dd has the condition then yes I’d like a formal dx 🤷🏻‍♀️ They did point out that by having the dx it would likely affect life insurance etc After saying I would still like the formal dx, they asked what wording would I prefer CFS or ME (same condition, just different names). Honestly the whole thing was baffling. The psychiatrist was very lovely with it all, but I’m not sure the acceptance and terminology should have been down to me 🤷🏻‍♀️

Sadly though and wrong though it may be, will find it extremely difficult to get an EHCP for extra educational support for your child without a diagnosis.

We have found a diagnosis extremely helpful in accessing multiple avenues of support. Without a diagnosis that support would ot have been possible.

I will never have it on my medical records when there's so much discrimination. I wanted to immigrate to Oz but what a backwards attitude. Same with the military .

This may be partly true - but only in the sense that with a primary diagnosis of ASD, some pathways of support, CAMHS knows will be very unlikely to help.

With eating disorders for example. A neurotypical person with ARFID for example can find therapy works well and they start to increase their food list. With ARFID in someone with ASD though, due to the sensory difficulties that are inherent with ASD, it can be much harder for psychotherapy to work.

On the contrary in my personal experience. My dd was very academically able, what they call high functioning autism (that’s a joke of terminology 🙄) .. took 4 years of battling to get her an EHCP. They only applied for one after she didn’t attend school for 2 weeks aged 15. A family member on the other hand, got an EHCP very easily for her son without any diagnosis at all. To this day, poor lad still doesn't have a dx despite being very evidently autistic and adhd 🤷🏻‍♀️

.??? Are you for real?!?

Ask for a diagnosis now. Even if your parents won't cooperate your clinic letters will help. Another family member (sibling perhaps) or friend from childhood could also support you but the clinic letters may be enough.
Worth a try.

I suspect that it could still happen, I've had to sign to allow a referral to be done by the schools and that referral wouldn't have be processed if I didn't do the parental part of it as well.