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 ?

I was assessed a couple of years ago, and as no-one in my family was able to help out (due to illness/death of my parents and sibling) I told them, and filled out the "childhood" section myself.

@Fifi0000 An NHS diagnosis doesn't have to be put on your records either. Doctors are not allowed to share any of your medical information without your consent, even with other doctors.

It’s still allowed, my son was referred for asd but thrown off the list after missing an appointment as I didn’t get the letter. I’ve chosen to not pursue it now. So yes it’s still “allowed” my sister also declined an asd assessment for her son.

It's about as much of a label as being deaf is.

What does a "label" do? It helped me understand myself. It meant I could explain why I have issues with stuff without just coming across as difficult

It was a different world. Your mum obviously thought she was doing right thing. I’d look at getting diagnosed now if you feel it would help you.
My friend works in a primary school now and says some parents are resistant eg saying they are premature and will catch up even in yr 6.

As a parent and a school counselor in the 80s - 90s, I saw both sides of this.
ADHD could be cured by diet = no red food dyes, no sugar, and a cup of black coffee every morning before school. For boys, a few laps around the playground would calm hyperactivity.
There was no autistic "spectrum". Severe autism was mental illness and exclusion from public school was the cure. Mild behaviors - OCD, lack of appropriate emotion, etc. were quirks dealt with by the individual teachers.
Many parents refused psychological testing because they did not want their child labeled as "mental" in official records.

To reassure you,any clinical assessment is about you,not your mum,you
The doctor will ask you about what you experience,mood,behaviour, your education and social history. An account of your presentation growing up. Were you under CAMHS etc? If yes the Doctor will seek their documentation. Your mother is not involved in your assessment

you also have to take into account that there are hereditary elements to ASD, and so often parents may not notice things, or want comments about things / labels, because they do the things themselves and consider them quite normal. Plus they may feel that the eyes turn on them, and they DEFINATELY dont want a lavel, especially if they come from an older generation where any kind of disability was a stigma.

Its often only when the wheels come off that they notice that there is a problem, and it highlights it. And todays world is far more stressfull and involves alot more sensory input than even a few years back, so the struggles often show up where they may not have done in the past. Looking back through the generations I can follow my ASD down the family line.

I have recently had an asd diagnoses, at 43. My mum will not engage or talk about it at all. Apparently labels don't help. Well it's helped me massively.

It’s not just the 80s/90s, definitely not.

Do you know your family history? There may have been a friend or relative ‘sent away’ that prayed heavily on their minds.
I went to a photography exhibition based on a local asylum and what struck me most was how recent some of the photos were - dating from my childhood yet very young children and adults with Down’s syndrome etc shit away in a Victorian institution.

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.

Still happens, particularly with borderline cases. Parents can take a diagnosis or not. It’s bonkers.

It was allowed then, as it is now, because in law parents not the state, make the majority of decisions about a child's wellbeing, including educational and medical decisions. The presumption is that parents have the child's best interests at heart and generally this is the case. The threshold of state interference in bringing up a child is quite high. In most cases this is a good thing.

@HoppingPavlova I'm highlighting this post so more people see it

@GeorgiaGirl52 Also highlighting this great post

@Fifi0000 I honestly don't know if I'm doing the right thing or the wrong thing keeping DC on the list 🤔 I've never disclosed it to anyone.

When I was in school I never told anyone that it was suspected I was dyslexic. I was ashamed, embarrassed, hurt, 😳 😔 😟 I struggle to put into words how I felt. Now I couldn't give a toss who knows. And I did eventually pursue a formal diagnosis. It's my short-term/ working memory that shit.

So from that aspect I think I'm doing the right thing but ....

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.

My DS has autism, as well as other conditions, and it has never affected/hindered the diagnosis of another condition.

The only effect the ASD has had, is the methods used to treat other conditions. For example he may have a play specialist available when starting a new treatment or they may discuss with us first the best way to proceed before starting a treatment, he see's a specialist dentist etc etc.

So in our experience having the Autism diagnosis has only ever been a positive thing.

It has for me I took my daughter to the doctors for something (physical problem) and as soon as I told the doctor she was autistic (I had to because dd was being difficult and not wanting to cooperate in showing them) the doctor decided there was no problem and put it down as attention seeking. Thought I won’t mention it next time!

The remark upthread about "just badly behaved brats with too many E numbers in their diet" reminded me of our neighbours.
The boy and another one terrorised the junior school, were trouble makers in the Comp but 'grew out of it' by teen age.
If they had been classified; would the condition have perpetuated?
I am aware of the contradictions in this post but it reflects attitudes that were fairly common.

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.

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).

My husband refused to get our son assessed for ADHD as he didn't want him labelled.

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.