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Original poster

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

205 replies

Anxiousanx · 14/03/2023 08:49

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 ?

OP posts:
mychildrenarealiens · 14/03/2023 11:10

Fifi0000 · 14/03/2023 11:03

Well it's your son , diagnostic over shadowing affects females more than males. Women are thought of as being more hysterical already add on a diagnosis and health inequalities rise.

Show quote history

The same goes for my DD. We just have more experience with DS having other conditions.
This is just our experience, as we all know, the health service in the UK varies wildly but it's only been a positive experience for us. (Getting the diagnosis on the other hand...)

bellswithwhistles · 14/03/2023 11:11

It absolutely still happens now. I teach a child who clearly has ADHD and ASD. Mum and Dad in denial and even talk about 'those type ' of children and aren't we thankful our child isn't like that.

Fifi0000 · 14/03/2023 11:13

bunhead1979 · 14/03/2023 11:07

My “label” has been life changing for me. I don’t feel such a complete failure and now i know why i find everything so difficult compared to others, I understand my reaction and know how to keep a better eye on my mental health.

You don’t have to tell anyone. My nhs doctors don’t know, nor do my workplace, i disclose on a “need to know basis”.

in the 90s when i was a teen, anything “different” or related to mental health was swept under the carpet to keep up appearances. My parents knew how bad things were for me (eating disorders, terrible mental health, self harm) but had no idea how to approach it.

This is good , I'm not advocating that people don't get a diagnosis. I know I do have ASD I work in the field but working in the field has allowed to accept myself many of the staff are also ND. If I worked somewhere that just had NT people I would really struggle. As I work in this field I know how hard it is for patients to get equal access to physical healthcare. We are working on it but it will take years for complete equality. As I can function and assimilate with NT people when needed I don't think a diagnosis would be helpful on my medical records.

AxolotlOnions · 14/03/2023 11:14

@Fifi0000 Autistic people are at greater risk when they are ill for many reasons. There is ignoring them, thinking they are being uncooperative or surely due to tone or sensory issues, thinking they are having a mental health breakdown when they are overwhelmed. Communication issues can mean that autistic people can minimise or not adequately explain their symptoms and discomfort levels. Having a diagnosis on your notes will reduce the risk of these things happening. You say you are good at masking but how is your masking when you are in pain and haven't slept for 2 nights on a noisy ward?

There are positives to diagnosis and those positives become greater and greater as stigma reduces and education increases.

StopStartStop · 14/03/2023 11:15

Still allowed. Parents have say. That's a good, protective thing but who knows if they will make the right decisions or not. My dd is pursuing ADHD diagnosis for dgd, instead of autism or both, 'to avoid the stigma of autism'.

I was diagnosed as autistic in my early sixties. I love my diagnosis, my 'label'. As I often say 'Everything I am is autism!' But I'm at the far end of life. People who have to make their way in today and tomorrow's worlds will have to make their own decisions on what is right for them.

MummyBobbles · 14/03/2023 11:16

springrises · 14/03/2023 10:54

I work with young people who have ASD and am part of the assessment team.
I'm always a bit depressed when people say "what's the point of a diagnosis" and pedal myths about it being a bad thing on your
NHS records. You don't have to disclose the diagnosis if you don't want to. It's entirely personal. The single most important benefit of a diagnosis, imo, is not the support you either do or don't get afterwards, but the self acceptance and understanding of self which emerges as a result of the diagnosis. Most of the older teens and adults I've seen post diagnosis are just massively relieved that finally they understand why they've felt different their whole lives, why they feel like a triangle shoved into a square, why they're anxious, couldn't attend school, have OCD, have an eating disorder, sensory sensitivities, social awkwardness, struggle with eye contact, struggle to form friendships etc.
For the first time, they realise they're not broken or defective, but have a neuro developmental condition which affects the structure of their brain. To deny it, or to decline a diagnosis, is neglectful at best, abusive and harmful at worst.

This 100%. My daughter and I were so relieved when we got her diagnosis as she'd had a truly awful time - 2 years out of school, depression, huge anxiety. She's been dealt double trauma by being diagnosed at 13, but we are now getting her the right support and our understanding of her now is so clear. My husband got a huge amount from watching the Chris Packham documentary and in particular Flo's story - he completely identified with Flo's mum and has had a revelation since watching it. We have had to fight every step of the way to get her the support she deserves, and it is there, you just have to walk over hot coals to get it.

SpinningFloppa · 14/03/2023 11:18

mychildrenarealiens · 14/03/2023 11:04

This is a doctor problem not an autism problem. Many parents with dc with Autism will quickly become more knowledgeable than some (not all) GPs and it imperative that you learn to advocate for your child (same sentiment goes for some schools/teachers etc).

Show quote history

Yeah I'm not stupid of course I made a complaint about the doctor but it was frustrating to see how easy she dismissed her when I mentioned it. Her whole attitude changed and I won't be mentioning it again in appointments.

sqirrelfriends · 14/03/2023 11:20

It’s still allowed but the school can report as medical neglect to SS.

Fifi0000 · 14/03/2023 11:21

AxolotlOnions · 14/03/2023 11:14

@Fifi0000 Autistic people are at greater risk when they are ill for many reasons. There is ignoring them, thinking they are being uncooperative or surely due to tone or sensory issues, thinking they are having a mental health breakdown when they are overwhelmed. Communication issues can mean that autistic people can minimise or not adequately explain their symptoms and discomfort levels. Having a diagnosis on your notes will reduce the risk of these things happening. You say you are good at masking but how is your masking when you are in pain and haven't slept for 2 nights on a noisy ward?

There are positives to diagnosis and those positives become greater and greater as stigma reduces and education increases.

I'm a HCP so I'm good at advocating for myself. I recently spent 4 nights in hospital 4 months ago. I had pre medication sedation before the operation. I told them I need my noise cancelling headphones all the time don't move them. I might change my mind in future but right now I don't trust it. I already have depression on my medical records and I'm sure it's hindered some of my care. I had an infection after a gynecological procedure , I insisted on a swab and the HCP said I'm sure you're just anxious because of the procedure. I insisted again and they rolled their eyes turns out I did have an infection and they sheepishly rang me and prescribed antibiotics.

Zerogive · 14/03/2023 11:35

Fifi0000 · 14/03/2023 11:21

I'm a HCP so I'm good at advocating for myself. I recently spent 4 nights in hospital 4 months ago. I had pre medication sedation before the operation. I told them I need my noise cancelling headphones all the time don't move them. I might change my mind in future but right now I don't trust it. I already have depression on my medical records and I'm sure it's hindered some of my care. I had an infection after a gynecological procedure , I insisted on a swab and the HCP said I'm sure you're just anxious because of the procedure. I insisted again and they rolled their eyes turns out I did have an infection and they sheepishly rang me and prescribed antibiotics.

Show quote history

That's quite a similar experience to what I've had. I got diagnosed with autism as a child and as a child I don't believe impacted my healthcare, I remember Dr's and hospitals being lovely about accommodations and thorough but as an adult I've had things dismissed as autism anxiety that were actually real problems and like you got the sheepish call telling me to go to hospital.

OP for historical evidence rather tham your mother you could take in all those letters you're reading.

oddUsername · 14/03/2023 11:39

It really hurts that my dad didn't believe in it and said it was nonsense, that hurt because to me he's obviously the same as me but he doesn't recognise this and understand he seems to be ashamed of the condition he passed down to me.

My mum had a meeting at my school about sending me to a special school which in reality would have been the best thing for me but she used it as a threat that if I didn't pull my socks up I'd be known as a dunce.
There was a statue of a school boy standing in the corner wearing a pointed hat on that said dunce in a museum near where I grew up and I thought that's what my mum meant I'd have to wear. Thats probably when I started masking.

AxolotlOnions · 14/03/2023 11:42

@Zerogive I have no autism diagnosis on my medical record and I've had that sheepish call. The problem is not with diagnoses it is with training and attitudes in the medical profession.

Fifi0000 · 14/03/2023 11:49

AxolotlOnions · 14/03/2023 11:42

@Zerogive I have no autism diagnosis on my medical record and I've had that sheepish call. The problem is not with diagnoses it is with training and attitudes in the medical profession.

Medical professionals attitudes won't reform quickly enough for me to feel comfortable. They have made a start with Oliver McGowan's mandatory training but I don't believe it will change in a short enough time frame. I can function with NTs sometimes I do struggle busy shopping centres is a trigger but I just remove myself. I feel on balance a diagnosis on my medical records would hinder more than help me at the moment. I appreciate this is not true for everyone if people are struggling the should seek whatever support they need..

Jules912 · 14/03/2023 11:49

Interesting, I have an Aspergers diagnosis on my record from before 1994. I never had any problem with medical care (at least no more than my NT friends do). I did get kicked out of school (that may have happened anyway) and my mum really had to fight for me to go to a mainstream school where I could sit GCSEs as that wasn't the norm back then.
More recently it was a challenge to even get DD on the list for diagnosis, despite it being at school's recommendation, as CAMHs don't seem to recognise the female presentation and she didn't tick enough boxes on the standard checklist. I can see how some parents would give up at the first refusal.

maranella · 14/03/2023 11:58

This still goes on OP and not just with autism, with ADHD and other conditions too. I have a friend with two DC, both autistic. Her DH was another one who 'didn't want them to have a label', and if it was just down to him he'd never have agreed to the diagnostic process. His DPs were exactly the same, denying and minimising, telling my friend they couldn't see any issue with either of the DC, seeing 'the label' as a problem that would negatively affect them through life, rather than a gateway to help, support, educational accommodations, etc. If it wasn't for my friend, neither of her DC would be diagnosed.

Some parents are so deeply in denial and actually just ignorant of the damage they can do to their DC by denying reality, withholding support, etc. I've got a DC with ADHD and having seen what this condition looks like I can see other DC that would benefit from diagnosis, but many parents are oblivious and/or sticking their heads in the sand, presumably hoping if they deny there's a problem for long enough it will just away.

journeyofsanity · 14/03/2023 12:01

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.

There are accommodations made for exams for one thing

EmilyBishopmyconfession · 14/03/2023 12:15

I have recently been diagnosed with autism by the NHS (at the age of 40). One of the forms for assessment is meant to be filled out by someone who has known you since childhood. There was no-one who could do that for me, so I just wrote my own recollections as best I could, and made that clear at the top of the form. I was given a diagnosis of Autism (assessor said it would have been classed as Aspergers years ago).

EmilyBishopmyconfession · 14/03/2023 12:17

In fact I've just check the exact wording of the report and it says I've been diagnosed with Autism Spectrum Disorder (ASD).

drspouse · 14/03/2023 12:20

It is EXTREMELY common for CAMHS to refuse to treat children with ASD for anxiety because they "don't do autism". Many of the same techniques work well in ASD as in NT children but they just "don't do it".
I think we may be better off with no ASD diagnosis given that we are trying to get DS seen by CAMHS.

GreenFingersWouldBeHandy · 14/03/2023 12:24

I don't understand what you are waiting for.

Go and see your GP and ask to be referred. You don't need to wait for your parents' permission...

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.

Untitledsquatboulder · 14/03/2023 12:29

@drspouse how will it help him to have treatment that doesn't work though?

IDontOweYouAReply · 14/03/2023 12:31

My parents turned my diagnosis down because they noticed kids when they have a diagnosis they let it define their entire personality and they sort of cave to it. I thought they were idiots at the time when they told me that. Fast forward a few years into the future and witnessing identity politics take over our entire culture I now think they made the right decision.

gogohmm · 14/03/2023 12:33

For the most part having a diagnosis or having appointments with a health professionals doesn't have a negative impact on your future life (only potentially positive) but certain careers may ban you for instance, 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.

My daughter is autistic and it was diagnosed aged 2 3/4, no mistaking it, the benefit of much later diagnosis is more marginal as all the evidence points towards early intervention.

Things were different then too. Don't blame your parents for acting how they thought was best then, not wanting a label was a real issue

LovelyLovelyWarmCoffee · 14/03/2023 12:39

Still happening today.
Private ASD diagnosis, last session was to read to report to us (parents) and check if we wanted to make changes / avoid certain words etc.
Then school (indie) where we were basically told that they could help us applying for an EHCP but that it was our choice as could possibly negatively impact secondary school applications.