Page 6 | Why was this allowed in the 80s/90s?

Anxiousanx · 2023-03-14T08:49:23+00:00

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 ?

Itstillgoeson · 14/03/2023 14:43

Wanted to say you are not alone, I think this happened in my family in the 1980s and seems to be happening again today.

My sibling had a lot of ASD indications at school in the 1980s. It was difficult to be around (meltdowns, lashing out, resistance to any sort of change), so must have also been awful for them. Secondary school started to get on the case, but our parents saw it as a 'failure of the teachers' (bizarre, help was clearly needed and would have been so beneficial) and moved them to a private school. So the sibling essentially grew up without any support in that area and I grew up thinking something was wrong with me and my family. Knowing what was happening and that it was nobody's fault would have made a huge difference, particularly for my sibling.

Today, my sibling's DC also show a lot of ASD indications and have relatives from the other side of the family with ASD diagnosed. They have no diagnosis and any suggestion - including from teachers - was brushed away. Also moved to a private school, which seems to address the issues in isolation but has not mentioned ASD. As the children are getting older behaviour is becoming more of an issue and they are becoming very anxious. Grandparents completely block any suggestions (from others or the sibling) that there may be ASD - just 'too bright for the class', 'too clever to play with other children', 'not interested in writing', 'the school would say if anything was wrong' (the school does, but someone needs to consult a professional to see what they get to when they join the dots).

Fifi0000 · 14/03/2023 14:45

Untitledsquatboulder · 14/03/2023 12:25

I'm not sure having an autism diagnosis on your medical record is as big a hindrance as people think, at least in terms on medical preconceptions. Doctors don't tend to delve deep into your notes. During a recent hospitalization I really wanted a big "patient is autistic " sticker to put on my son's notes as so many hcp seemed oblivious, or maybe didn't connect that to the avoidance of eye contact, bewilderment at small talk (they were nice and trying to put him at ease) and inability to use the pain scale. A couple of the nurses got it, that was it.

It is your summary care record which they can pull up has a list of ongoing problems so most important bits (diagnoses at the top) bullet points on top of the page it's one of the first things they see. All NHS care providers can see the summary care record.. You will be banned from the military ,and as people mentioned immigration entry to certain places. To me if it's mild the person can mask well , is self aware and can pass as NT in situations then there's no need to have it documented it's more of a hassle.

Pasithean · 14/03/2023 14:45

In those days once you where statemented or labelled in those days you where f£&@3d regarding mainstream schooling. Diagnosis methods and treatments where also more limited.

Summerpetal · 14/03/2023 14:46

Anxiousanx · 14/03/2023 08:56

No because I need someone to do my childhood history and my mother refuses so I don’t think I can ?

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I’m 50 ,just getting assessed this year for ASD and ADHD ,my mother was useless and couldn’t even remember anything from my childhood .
could remember plenty from her own tho.

3WildOnes · 14/03/2023 14:48

Verbena17 · 14/03/2023 14:35

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.

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As I said up thread his primary school and senco were absolutely brilliant at putting support in place and making appropriate adjustments. It was never an issue for us, if we had encountered barriers we may have pursued a diagnosis. He is now at a private secondary and again they are brilliant at supporting his needs.

SpringIntoChaos · 14/03/2023 14:50

OP plenty of adults go on to get a diagnosis without input from a parent. How do you think people without any living parent get a diagnosis? You have documentation, and you have 'lived it' so you can tell your own story now.

Good luck to you xx

Reugny · 14/03/2023 14:53

NeverDropYourMooncup · 14/03/2023 12:53

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.

@NeverDropYourMooncup

Children have two parents.

If you are a narcissist and your child is "defective" then it is clearly the other parent's fault.

However lots of people are simply in denial about conditions that can be inherited whether they are developmental/learning disabilities, blood disorders or whatever due to the stigma they think and feel comes with having them.

Helpmethanks · 14/03/2023 14:59

This happened in my STBX family in the 80s
His sibling is clearly autistic & school could not meet her needs but parents (STBX inlaws) moved sibling to a private school

Our DS is autistic
They refused to give me any family history about the sibling and did not think we should get our DS diagnosed

In the end STBX backed his mum, had an affair with his coworker and left me for her.

Daftasabroom · 14/03/2023 15:00

3WildOnes · 14/03/2023 09:01

You are still given the option to opt out at any stage in the assessment. I was told my oldest has autistic traits. We were then asked if we wished to carry on the assessment and in the end we decided not to. The process was causing him anxiety and I wasn't sure what the benefit of having a diagnosis would be. In my experience you don't get any support once you have got the diagnosis.

Please pursue a diagnosis if you have been offered one, ASD isn't something someone will grow out of or something you can train out of someone. As someone who's parents refused to allow a diagnosis of a similar condition I implore you to seek a diagnosis if one has been offered.

AxolotlOnions · 14/03/2023 15:03

@SpringIntoChaos People are turned down if their parents have died, it depends on the diagnostician it seems.

Zerogive · 14/03/2023 15:10

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Message deleted by MNHQ. Here's a link to our Talk Guidelines.

For adhd perhaps, but not asd which is the diagnosis op is looking to pursue.

Ionlydrinkondaysendinginy · 14/03/2023 15:19

Fifi0000 · 14/03/2023 10:40

Because of diagnostic over shadowing it affects all your medical care it even causes death. If you go in saying you are having physical health issues it's common they will look to blame your diagnosis instead of thoroughly investigating. I would only pursue a diagnosis if it was severe. I know I have ASD, I was bullied had very repetitive routines. I had to train myself to understand socialising and mask. School did say they wanted to get me assessed and maybe I would be happier in a special school. I was actually intelligent and my parents knew a special school didn't offer many qualifications.

I still wouldn't pursue an NHS diagnosis now because it's mild. I've learnt to mask , masking feels like second nature to me but as soon as I get home I let go and allow myself to stim etc. I sometimes even stim at work where theres a lot of ND people. I don't think a diagnosis would help me in the long term. I accept who I am and have the coping mechanisms in place. The world will always have some discrimination so if I can get by without the diagnosis I will.

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This 100% my diagnosis mh diagnosis(not autism) has almost got me killed multiple times by nhs hospitals

Excited101 · 14/03/2023 15:38

I got an ADHD diagnoses a few months ago, in my mid 30’s. I thought it would be a relief but I’m not sure it was/is really. I had been thinking not getting a diagnosis would have been really upsetting but perhaps really I wish I actually never heard of ADHD- I don’t know.

Im finding that im going back though 30-odd years of memories of situations having thought I did the right thing and now doubting myself as im the ‘defective’ one. All break ups and arguments must have been because I was wrong, missed social cues, was too ‘weird’ etc.

my general thinking is that all children who can get a diagnosis, should be given one- but now km not so sure. I definitely feel like more of a tendency to ‘ADHD’ now I know I have it, but maybe I was masking before?

DSis also has definitely patronised me on more than one occasion since I got it, she hasn’t had her diagnosis yet but is perusing one, so I’ve been quite careful who I have told about it.

Finally (sorry!) in answer to your question, I didn’t need any parental input, or anything from anyone who knew me as a child. The actual assessment was only 50 mins (which I felt was much too short) and I only had to wait about 3 months for it. I have been offered medication or coaching, though my psychiatrist has recommended medication (which I don’t really want) as she didn’t think I’d ‘be able to focus enough on a coaching method of help’- that’s the bit that actually upset me the most tbh. I don’t get in debt, I have a degree, I hold down jobs, relationships etc.

BertieBotts · 14/03/2023 15:54

i was treating elderly people who had cancer and whose adult children would say that their parents were not allowed to be told of their cancer diagnosis as didn't want them to be "distressed"

This still happens. Last year my grandad received a diagnosis of probably cancer and my mum/uncle decided not to tell him it was later seen by the specialist who said it wasn't cancer and my mum felt this vindicated her choice as "he would have been upset for nothing"!

3WildOnes · 14/03/2023 16:49

Daftasabroom · 14/03/2023 15:00

Please pursue a diagnosis if you have been offered one, ASD isn't something someone will grow out of or something you can train out of someone. As someone who's parents refused to allow a diagnosis of a similar condition I implore you to seek a diagnosis if one has been offered.

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I know it's not something you can grow out of or train away. However, I don't want to pursue a diagnosis unless it something that my son himself would like to do.

JessicaBrassica · 14/03/2023 17:31

I would swear my friends kids are ND. When school tried to discuss it she was very dismissive of the idea. They didn't pursue it.

As a clinician we have had kids desperate to see us and parents haven't engaged. We couldn't see a 14yo without parental consent.

NeverDropYourMooncup · 14/03/2023 18:01

Reugny · 14/03/2023 14:53

@NeverDropYourMooncup

Children have two parents.

If you are a narcissist and your child is "defective" then it is clearly the other parent's fault.

However lots of people are simply in denial about conditions that can be inherited whether they are developmental/learning disabilities, blood disorders or whatever due to the stigma they think and feel comes with having them.

Show quote history

They have to accept making a mistake in their selection of breeding partner and that their vastly superior genes didn't win through. You can ask my ex about that - I was apparently selected for looks and intelligence, and as I don't have scoliosis or pectus excavatum, it's clearly impossible that a child of his could have them. Couldn't accept that his DNA had something to do with those, so the solution was to deny their existence altogether and blame the external factors of 'being allowed to slouch and not made to exercise enough'.

It is true, however, that his absolute rage at my being diagnosed with autoimmune disease was clearly an insult to him personally as I'd contaminated his gene pool and, had he known about it in advance, I would have been dumped prior to conception. He still alternated between 'It's not real, it's in your head' and 'You MADE this disease happen deliberately by thinking it into being', with a 'You could make this go away if you wanted to, it's just a label, you are only constrained by your negative thoughts and lack of exercise, reject the label and you'll be cured', though.

Notimeforaname · 14/03/2023 18:04

Still happens..I know a 17 year old who's parents are the same.

GothicNight · 14/03/2023 18:56

NeverDropYourMooncup · 14/03/2023 18:01

They have to accept making a mistake in their selection of breeding partner and that their vastly superior genes didn't win through. You can ask my ex about that - I was apparently selected for looks and intelligence, and as I don't have scoliosis or pectus excavatum, it's clearly impossible that a child of his could have them. Couldn't accept that his DNA had something to do with those, so the solution was to deny their existence altogether and blame the external factors of 'being allowed to slouch and not made to exercise enough'.

It is true, however, that his absolute rage at my being diagnosed with autoimmune disease was clearly an insult to him personally as I'd contaminated his gene pool and, had he known about it in advance, I would have been dumped prior to conception. He still alternated between 'It's not real, it's in your head' and 'You MADE this disease happen deliberately by thinking it into being', with a 'You could make this go away if you wanted to, it's just a label, you are only constrained by your negative thoughts and lack of exercise, reject the label and you'll be cured', though.

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Damn that is fucked up.

GuyFawkesDay · 14/03/2023 19:05

Had numerous conversations with parents over the years who don't want their child to have 25% extra time in exams/scribe etc because they don't want them "labelled"

They'd rather their child totally underachieves against their ability instead 🙄😡

JMSA · 14/03/2023 19:08

I think your expectations are high for that particular time in history.

NameThenChange · 14/03/2023 20:49

3WildOnes · 14/03/2023 09:01

You are still given the option to opt out at any stage in the assessment. I was told my oldest has autistic traits. We were then asked if we wished to carry on the assessment and in the end we decided not to. The process was causing him anxiety and I wasn't sure what the benefit of having a diagnosis would be. In my experience you don't get any support once you have got the diagnosis.

You are certainly not going to be given support without a diagnosis.

NameThenChange · 14/03/2023 20:54

2022again · 14/03/2023 09:23

I think even now there are people who choose not to put a label on it because of fears around bias....and there is still reason to think that somebody having ASD could face discrimination because of it. My child has a label and although it unlocks help it also perhaps makes people think she will achieve less in her life because of it. (despite people like Richard Branson having the same label!)
I started work in the 90's and there were lots of things that were different....i was treating elderly people who had cancer and whose adult children would say that their parents were not allowed to be told of their cancer diagnosis as didn't want them to be "distressed"....ironic as many of these elderly people had either fought in or lived through a war so had been exposed to far more emotional challenges than their kids ever had.

A friend persuaded the medical staff to let her do this recently with her adult brother who had SEN.
He died and they never told him he had cancer or that he was going to die. Because they felt it would cause him unnecessary distress.

TomeTome · 14/03/2023 21:47

NameThenChange · 14/03/2023 20:49

You are certainly not going to be given support without a diagnosis.

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Support us not dependent on diagnosis.

autastic · 14/03/2023 22:04

You still can, my friends son was declined because her ex objected and I was asked if I agreed and if I didn't they wouldn't diagnose that was 2015 and 2018.
I said do you think I have spent 3 years fighting for this for a laugh!